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kmarie 
I have been a life long asthma suffer. In Oct.2007 I as diagnosed with allergic broncopulminary aspergilosis. I have spent the better part off the last two years trying to fing answers and share with people who share my experiences. I have just started a Cause for ABPA and Aspergillosis on Facebook as well as Myspace. If anyone could add anything at all to my new facebook Cause I would appeciate it. I am just trying to reach out in all directions to try an create support and a forum to share and learn. Please take a look and post anything you feel and think about chronic illness. I really need your support to get this message out
Thank you
Kimmy
I have been a life long asthma suffer. In Oct.2007 I as diagnosed with allergic broncopulminary aspergilosis. I have spent the better part off the last two years trying to fing answers and share with people who share my experiences. I have just started a Cause for ABPA and Aspergillosis on Facebook as well as Myspace. If anyone could add anything at all to my new facebook Cause I would appeciate it. I am just trying to reach out in all directions to try an create support and a forum to share and learn
Thank you
Kimmy
Thank you
Kimmy
I am so frustrated and confusedPosted on 03/27/09, 08:18 pm
I have been working on my appeal for social security for close to a year.
I tried to go the first round alone with out representation. this of course did not work and I was denied.
I have an attorney now but i dont know exactly what he wants me to do. I have contacted each of my doctors as well as the hospital I was in. I have asked them all to send in there records as well as letter explaining my diagnoses and reason i couldnt return to work. I contacted them in person as well as by letter and email. I then got family and friends to write letter as to how they have seen my day to day regression in the past years due to my conditions.
After waiting to hear from my attorney for weeks on end I recieved a call from his para legal urgently and rudely saying we have very little time to complete this investigation. She has to bring me out relesase forms to sent to my doctors from their office.
Now I recieve an email from him today telling me I need to focus more on my case to get these things done. he claims he recieved nothing at all from any doctor or hospital and the letters from family and friends were not good enough and had to be hand written not typed and emailed. I was never told this. I dont know what else he wants me to do. If I was able to conduct my own investigation I would be cognitively well enough to get a job!! I dont have anyone to help me everyone close to me doesnt know what to say.
I have cushings syndrome as well as a rare lung condition now I am suffering emotional and mental problems as a result of these illnesses.
He said if i needed immediate assistance like is I was going to lose my home , car or utilities it could be done faster. I told him I had already lost all that and was living with a friend completly indigent. Borrowing money for my medications to stay alive. He said nothing.
I tried to go the first round alone with out representation. this of course did not work and I was denied.
I have an attorney now but i dont know exactly what he wants me to do. I have contacted each of my doctors as well as the hospital I was in. I have asked them all to send in there records as well as letter explaining my diagnoses and reason i couldnt return to work. I contacted them in person as well as by letter and email. I then got family and friends to write letter as to how they have seen my day to day regression in the past years due to my conditions.
After waiting to hear from my attorney for weeks on end I recieved a call from his para legal urgently and rudely saying we have very little time to complete this investigation. She has to bring me out relesase forms to sent to my doctors from their office.
Now I recieve an email from him today telling me I need to focus more on my case to get these things done. he claims he recieved nothing at all from any doctor or hospital and the letters from family and friends were not good enough and had to be hand written not typed and emailed. I was never told this. I dont know what else he wants me to do. If I was able to conduct my own investigation I would be cognitively well enough to get a job!! I dont have anyone to help me everyone close to me doesnt know what to say.
I have cushings syndrome as well as a rare lung condition now I am suffering emotional and mental problems as a result of these illnesses.
He said if i needed immediate assistance like is I was going to lose my home , car or utilities it could be done faster. I told him I had already lost all that and was living with a friend completly indigent. Borrowing money for my medications to stay alive. He said nothing.
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Awww, hun. I am so sorry you are going through this. It is criminal how hard they make it.
I have not been through this, but I used to work with people that were wrestling the process, like you are. What I learned is that it is important to talk to the office manager at the dr's office (some of them are very helpful, some not so much) and it is best done in person, with specifics of what you need written out.
I have helped people write letters, such as "I am working with an attorney, Mr. BlahBlah to appeal for SSDI. I need a letter to ______, from the doc, explaining _______. I need the medical records sent to this person, at this address, and I need it, and the medical releases, signed and mailed by Friday." Very specific, and get them to sign a copy for you to keep, signed and dated. Then, a phone call to follow up right before you need it mailed.
Also, I don't have any personal experience with this organization, but I bookmarked it as I am always looking for resources for people. Check it out: it is The Autoimmune Information Network http://www.aininc.org/
You can also contact NeedyMeds.org http://www.needymeds.org/
or RxAssist.org http://www.rxassist.org/
Take a deep breath...and don't forget to exhale! You can do this.
Tessie2
I just had my appeal hearing before the SSI adjudicating judge. It took me about two years for my appeal to be heard. It wasn't too bad. Now I have to wait 2 months more for their decision. I also secured the services of an attorney and he did the bulk of the work contacting all the doctors and hospitals. His office would periodically send me a questionnaire asking about any recent doctors appts, medication changes, or hospial visits.
During the hearing, my attorney guided me through my testimony and then the adjudicating judge asked me some questions. He asked me basically about a normal day for me, and whether I did any chores around the house, whether I worked at all, etc.
I don't know how it will turn out, but the hearing isn't too bad. I too have multiple problems. Asthma, dysphonia, hypertension, and enlarged ventricles of the brain. This causes me SOB, hand tremors and balance problems. I know I can't work but I don't know if the judge will agree. Time will tell. My doctors and attorney were very much on top of things. Sorry that you have had such problems with yours. Good luck.
Tom
thp636