ENDO Messages for May, 2007: Re: CLAIMING BENEFITS (Ł) IN ENGLAND FOR ENDOMETRIOSIS....THIS IS A DISABILITY

Re: CLAIMING BENEFITS (Ł) IN ENGLAND FOR ENDOMETRIOSIS....THIS IS A DISABILITY

From: anonymous@obgyn.net
Thu May 31 23:39:25 2007

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At Wed, 28 Feb 2007, Elisa wrote: >
>Hi Nic~
>
>I am never happy for someone who is going through this process but I am
>very proud of you for not only proceeding with this but doing all you
>need to do for you and your situation. It is a very humbling experience
>to give up your old self and get this type of assistance in the
>meantime. It's very hard when you can't make more than xxx # of $$ and
>you must wait a very long time. The other thing that I found out was
>helpful in my city many years ago was the townships usually have a
>budget for people in our situation as well. Though it's not much they
>do provide you with a little something to go with the foodstamps,
>medicaid (until you qualify for medicare) and the SSI for those who
>qualify.
>
>The good news is if we are disabled work or school will not be an option
>because we are to sick to do this type of activity and unable to move
>around etc. The time gets away from us before we know it anyway through
>all this medical maze of treatments, surgeries and researching new
>options. I heard that the east coast did have longer delays but I never
>thought about the 911 impact on your situation as well. I understand
>for our families many of us try to push ourselves to go to work and
>finally our bodies give way and it decides for us when it's had enough.
>I believe yours should move through just fine. If I can help in anyway
>you just let me know. Sometimes an attorney may have questions or need
>some input and I can try to offer what I have been through. I know each
>region has different time lines etc. but if it can help I never want to
>stand in the way of helping.
>
>Please keep me posted on how your case turns out and we can start
>tracking these so the next sister who god forbid may need our help can
>use the successes of our cases to lean on and together we are helping
>each other get through this horrible and very long and grueling process.
>I pray that most of you find a way to manage through this disease and
>not have to travel down this road. If you find yourself down this road,
>just know you have some sisters here to help you through it.
>
>Have a great day everyone! Thinking of you...
>
>--
>Elisa
>
>At Tue, 27 Feb 2007, Nic wrote:
>>
>>Wow!, Marie, I'm so glad to have read your post. I'm currently in the
>>middle of this process as well...For me it's been two years waiting. I'm
>>now waiting to see the judge. The whole thing has been a long and drawn
>>out process. I originaly tried to take a medical leave from my job. I
>>was sick and in the hosp. and also just had a surgery. My boss ended
>>up firing me in the middle of my medical leave! (even though legaly he
>>is not supposed to be able to do that) I got a letter sent to my house
>>saying I was terminated from my position, which also meant my health
>>insurance was terminated (I wasn't even able to attend my post op
>>because of this!) This is how I first came to applying for
>>disability...In the US you can also apply for medical assistance on the
>>state level (disability is on the federal level), I was able to get
>>medical assistance and the state also determined that I was unable to
>>work at the time, so I also recieved food stamps and public assistance.
>>This is only a temporary measure though and unfortunatly, the wait for
>>"federal disability" in my state is more than 2 years ( I live in NY and
>>since 911 a lot of people have become very sick, esp rescue workers )
>>the system is overloaded right now and the gov't is not doing anything
>>to help speed the system along. The process is long and difficult, it's
>>often dehumanizing, and just plain downright depressiing, and Marie is
>>right about Endo not fitting into any of the standard "molds" by which
>>you are judged. She is also right in that you need a lawyer or advocate
>>who is familiar with the system working with you. You also need a
>>supportive environment with famiy or friends. Also some people ask the
>>question about working at the time they apply for disability and this is
>>a tricky question since usually the gov't will consider people who are
>>working at the time they apply, to be fully-abled, (even if it is out of
>>nessecity). But on the other side, if you are not working during this
>>application process you might just find yourself on eggshells the whole
>>time, not having any income or way of paying for your high-cost medical
>>needs. So it's really a tough situation. I would not have applied if I
>>thought there were even the slightest bit of possibility that I am able
>>to work. I have a master's degree and would work if I could, but I've
>>been so sick!...this whole process has been humiliating. Which is why
>>I'm so happy to hear of anyone with Endo winning a disability claim. I
>>agree with Maria, this disease can be disabling, thus it should be
>>recognized as a disability. Again everyone is different, I suggest you
>>thouroughly research the process in England, get people to support you
>>and prepare yourself for the process which, as I said can be long, drawn
>>out, and at times humiliating. You must have all your doctor's records
>>and doctors that are on your side and will support you, since they are
>>the ones who will be filling out all your forms. Even still, they will
>>send you, and subject you to physical and mental examinations with their
>>own doctors, (who most likely know very little about Endo and thus how
>>can they even proper evaluate you.) As Maria said there are a lot of
>>problems with the system and Unfortunatly in the years after 911 most
>>all public welfare programs, (at least here in NY) are saturated with
>>claims making the workers disgruntled, sick people waiting (and in some
>>cases dying!) and money tight.
>>If you want to write back to me, please do, or just post to this forum
>>(my email is: "anonymous@obgyn.net" I would like to hear from any others
>>with Endo who are in, or have completed the disability process. Where
>>did you apply, and what was your experience like. For me, my hope in
>>the system is quickly fading. I hope you fare better.
>>Nic
>>
>>At Tue, 27 Feb 2007, Elisa wrote:
>>>
>>>Hi Marie~
>>>
>>>I know this can be VERY Frustrating especially when it comes to
>>>disabilty. I can only speak for me and from the States. It is a VERY
>>>long and hard process. Overall it takes at a minimum a year and that is
>>>just a standard process to weed out people through the system.
>>>
>>>I was awarded for Endometriosis back in the mid 90's. Then I was able
>>>to utilize their trial work program which is now called a ticket to work
>>>program which encourages disabled people who are young to try to have
>>>some type of existence in the world inspite of this debilitating
>>>disease. Unfortunatley, in my case when I used the program after 5
>>>years it came up for review which I had thought at the time I was doing
>>>OK so I chose to come off. I had and still have all my medical records
>>>as supporting documents and I know some people think the Dr.'s need to
>>>literally write that a person is disabled. The system looks at
>>>everything and sends forms to the Dr.'s as well to fill out and if we do
>>>our part and submit our evidence hopefully the two worlds come together.
>>>
>>>I have been waiting a year again in March. I just had my hearing before
>>>a Judge. It was great because I believe they truly came away
>>>understanding this disease. The judge couldn't believe the amount of
>>>surgeries I have had. To us it's nothing because we keep having them in
>>>hopes that the next one will make a difference and help. He was
>>>understanding and even said the vocational witness didn't need to
>>>question me because in the end doing sedentary work with this disease
>>>and the medicines is just plain hard to do (again we all are different)
>>>but I believe it can continue to be recongnized. We pay into it. If we
>>>have exhausted all medical options and invasive and non invasive methods
>>>are not working something isn't right and we must look into our options
>>>further. When we are bed ridden at times and can't even stand up more
>>>than 2 hours before lying down, medicines, pain mangement, ER visits and
>>>so much more there is clearly grounds for filing the application for
>>>review. I have found that getting a good attorney who works with the
>>>system (I am not sure how it works in England) but here they do it on a
>>>no recovery no fee system.)
>>>
>>>I am not condoning anyone abusing the system at all, but if someone is
>>>disabled it doesn't hurt to look into this process and see if you
>>>qualify. This is a disease without a cure. They do look at it like a
>>>benign form of cancer. The hysterectomies we have are a form of
>>>casturation. I have found that some give up on the system because of
>>>the amount of paperwork and time it takes here to file. I believe there
>>>are many women out there who qualify and don't even know they have this
>>>option. The best thing I can suggest for you and anyone is to make sure
>>>you get all copies of your medical records from as far back as possible.
>>>Keep them in a 3 ring binder. Get an attorney who can help you file
>>>this and lighten your emotional and physical load through this process.
>>>Have them look up the past cases in the area you are in for past awards
>>>for this disease. If you need to go before a Judge it's OK. Get
>>>articles ready and keep them in your binder that pertain to your case.
>>>We are so well informed especially through links like on this forum.
>>>Remember, we don't choose disability, it's chooses us. What we do with
>>>that opportunity is up to each of us. It's hard and emotionally
>>>draining as well as physically because you feel like no one is
>>>listening. I promise if you give it your all and get some good help
>>>behind you with someone who specializes in this field it can make a
>>>difference.
>>>
>>>I found that in this refiling for me that there isn't really a cookie
>>>cutter slot we fit into period. I hope in time to write the SSD
>>>Administration as they encourage us to write with our thoughts on how to
>>>make a difference on disability and it's processes. I want to let them
>>>know what to expect when receiving possible endo claims and maybe some
>>>areas of reconsideration they can possibly give others. As each of us
>>>are different with how medicines effect our bodies, the same is with our
>>>disability. It's hard for anyone to say to a person who has had minimal
>>>amount of surgeries that they don't qualify when they are not seeing the
>>>whole picture for that person. I have come fully loaded from the
>>>STAGEIVPLUS factor in my case and they just shift my paperwork out there
>>>not because I wasn't really disabled but because it didn't fit their
>>>guidelines. I welcomed the chance to go before the judge because it
>>>didn't make sense how this doesn't qualify with all the supporting
>>>documents saying so. It didn't make sense that I used their program and
>>>it's causing me problems again. I discovered it's just the process. It
>>>wasn't that I am not disabled.
>>>
>>>I hope this makes some sense. If a person gets rejected it's not
>>>personal it's the process. If more applications come through over time
>>>then they (the Adminstration) can get better familiar with this disease
>>>and the long term effects it has. I am happy to help anyway I can for
>>>you. It is a debilitating disease and it's clearly documented, the
>>>question each of us has to decide is it worth the fight. I understand
>>>all those who choose not too because it is VERY tiring but I just
>>>couldn't sit back and let this disease define us here at home.
>>>
>>>If I can help you or anyone please do not hesitate to write me at
>>>stageivplusisus@gmail.com. I can't remember the name of the first women
>>>who got it in California in the early 90's but I have to thank that
>>>person for the rest of my life for inspiring me to go forth and be the
>>>first for Illinois. Together we can make a difference!! :)
>>>
>>>I am here for you..
>>>
>>>--
>>>Elisa
>>>
>>>At Tue, 27 Feb 2007, marie wrote:
>>>>
>>>>ENDOMETRIOSIS IS A DISABILITY...........SO WHY ARE US WOMEN
>>>>SUFFERING.....WE PAY MONEY OUT FOR TREATEMENT AND WE ARE TOLD IT IS A
>>>>DISABILITY....WHY DO WE PAY FOR A DISABILITY ???????????.......DOES THIS
>>>>NOT MEAN WE SHOULD HAVE SOME KIND OF FINACIAL HELP.....I HAVE HAD TO CUT
>>>>MY HOURS DOWN AT WORK AND EVEN TIME OFF WORK ILL....THIS IS NOT WHAT I
>>>>WANT TO HAPPEN.....IM 22...IVE BEEN DIAGNOSED SINCE DECEMBER 2000 AND
>>>>IVE HAD 5 LAPAROSCOPIES AND AM NOW IN MY 5TH MONTH OF LUPRON.......(
>>>>WORST TIME OF MY LIFE ).........ALL I WANT TO KNOW IS IF THERE IS
>>>>ANYTHING I CAN CLAIM FOR THIS DISABILITY IN ENGLAND CAN SOMONE PLEASE
>>>>HELP ME........CONTACT ME @
>>>>
>>>>--
>>>>MARIE1PHILIP@AOL.COM
>>>>
>>>> ...........ANY HELP AT ALL WILL BE VERY MUCH APPRECIATED.....XXXXXXXX
>>>>

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