Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 I agree. My atty fees were 20% of back payment or $5300.00 whichever was the *lesser* amount (the lesser was a surprised to me). If they had not won my case, all I would have been out of pocket was the $10.00 my doctor charged them for her time to write a letter on my behalf...I wonder if this $10.00 is a typo though bc that seems rather a small fee for my doctor's time. Still need to verify that. Anyway, even the $5300 is a small price to pay when being awarded back payment of 3+ years. I really wasn't sure if having an atty would matter that much, but once we got before the judge the atty knew all the right questions to ask the vocational expert. She used my doctor's letter to ask the expert very specific questions which I believe had a powerful impact on the judge. It also helped just to have someone to guide me through the process so I knew what to expect. It can be such a stressful and humiliating process that I found it a comfort in being with someone who understood and could let me know what I could expect. That alone I think would have been worth it. > > > > Without an attorney you may write something that is taken the wrong way and it will haunt you forever. The attorney does not cost you anything - getting one can save you a fortune and frustration beyond belief. Try finding one who understands chronic illness and give them the basic information about Lyme - it helps. Best - Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Definitely...doing that now. > > > Great letter Connie! It's so nice to hear a SS success story! > > > > Cindi > > > > Cindi Callanan, MsT, CST, BEC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 What made me sad is I only had 2 people write letters for me bc I have lost touch with everyone else in my life due to this illness...or the people I have been in touch with don't see 1st hand what I go through. My atty said the letter should only include 1st hand information, not things my friends only hear about for me (ok, that part is a no-brainer). I am not a person who accepts help easily or wants people around when I am in bad shape (which as you know can be daily). It was really an eye-opener what a shut-in I have become. I've really come to depend on groups like this as an outlet. Thank you all for being here! And Sandy, what great sister you are! Families hurt too, and I am sorry for what it did to you to put the facts about your sister's illness down on to paper. I hope you get the support you need as well; sometimes the caregivers need care-receiving, too. Hope your sister is doing better now. Connie > > Dear Sandy, > > What a wonderful thing for you and her other friends to do and how wonderful that you all care so much. So many of us have had family/friends criticize and condemn us for having lyme and being sick ... it's so nice to hear the other side! > > Cindi > > Cindi Callanan, MsT, CST, BEC > > Re: [ ] Social Security > > > Hi...I don't post often, but read daily. I'm caregiver to my " sister " (40 year friendship qualifies us as sisters!!) who contracted Lyme in the late 70's. > > We are in Ohio. > > She receives Social Security Disability for the diagnosis of Lyme Disease. > > What helped her win her case on the first try were all of the testimonals she had from friends, co-workers and realtives. > > She asked everyone she knew to write a " To Whom It May Concern " letter being brutally honest about the changes we had witnessed in her health. > > She had probably 30 letters when she went for her hearing. How the letter was prepared was not important - the content is what mattered. > > Some were typed, some hand written on school notebook paper, some printed...didn't matter. > > I remember it broke my heart to have to put on paper how I noticed specific Lyme symptoms she had - but all the letters helped her win her case. > > Best of luck, > Sandy T > Trenton OH > > __________ Information from ESET NOD32 Antivirus, version of virus signature database 4526 (20091020) __________ > > The message was checked by ESET NOD32 Antivirus. > > http://www.eset.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 , I only wish I could " babble " like you. That was very well put--all of it! But I just have to say that I cannot believe the rep wanted you to act crazy. Ugh. Personally I feel like there is always a real push to go the route of " depression " . Out of all the things in my file (and I felt there was a lot) the woman from SSI who conducted my phone interview (prior to my atty getting involved) was only interested in my symptom of depression, and she thought I should be seeing a counselor. I knew seeing a counselor was not going to solve anything. I deal with things pretty much in a positive manner and I knew that my depression was being caused by something physical (at least at that time I knew the hormones played a part). It was as if all the office could understand was the depression; they didn't seem interested in even trying to understand anything else. It was one of the most frustrating aspects for me. Sure, I could have " played up " the depression aspect of my illness, but the facts were that it was not an everyday symptom for me. There were really bad times (sometimes even very strong thoughts of suicide), but it was not what was disabling me. Like you, I had too much integrity to lie about it, even though I was afraid that in the end it would hurt me. > > Jenni and others, > > I just wanted to share that I know what it feels like to be young and unable to work. This is not to take away from others who have also become disabled. I'm 31 and have been on disability for 5 1/2 years. I'm am blessed that my insurance company pays my disability; I am not on SSD. They did hire someone to represent me. Of course I did go through the denial letters as well, in the beginning. Although, today, there are so many other things in my file, so many diagnoses I did not have before. Anyway, I thought they hired a lawyer. I was mistaken. At my hearing this " representative " did not speak one word for me, and if I could have represented myself I would have had a much better chance of winning! > > My " expert " was a retired cardiologist! In his day fibromyalgia didn't even have a name, nor was it considered an actual problem or disability. Instead he said he thought it was psychosomatic. My rep later told me to act crazy!! I refused to allow anything in my file that disregarded my real illness and alleged it was in my head (or was false). Now, I already was recieving benefits, so I was not desperate. This will not give me more income. > > I was hit with FMS right out of college and after a neck surgery, at age 22, but chronic pain hit at 21 with neck problems, and Sjogrens hit at age 19. I was hit hard and life became debilitating right away. Within 6 months I was told to buy a cane, could not stand for longer than a min, barely walk, etc, therefore could not do my Christmas shopping. I could list endlessly the problems/symptoms I have. But FMS chronic pain and fatigue sums up a lot of my main problems. I have brain fog with a poor memory, difficulty with word retrieval, and I always lose what I'm saying in the middle of a sentence. Of course there is neuropathy, migraines, chronic head and facial pain, IC, TMJ, IBS, carpal tunnel, SICCA, every type of pain you can come up with, and endless symptoms. > > I feel that I have lost out on my 20s. I am thankful I had fun college years. I slept my way through graduate school. Well, I slept as others studied. But I had to give every ounce of myself, was very ill, needing sleep about every 4 hours, and all night long. > > I knew I was too sick to work, but I had to try out of grad school. I feel that I worked myself onto my death bed until there were strings of days I could not get out of bed and make it to work. I fought a good fight. I slept 16 hrs a day, all weekends, I was in bed as soon as I got home each day. I would have to crawl to the bathroom each morning. I would lay on the floor sleeping after a shower because it took every ounce of energy out of me. I know these pains. > > As a young person, it was impossible to accept so I fought it instead of accepting it and fighting to get better. It is devestating when your peers are getting into careers, becoming successful, having children, and moving on in other ways. And in comparison I was fighting for my life, trying to learn all I could, and completely devestated and lost. > > Today, I see that I am on an important path and there are lessons that I need to learn. I have learned so many already. I have no choice to go on, to continue the fight, but to listen to my body and give it the rest it needs. I don't believe that I am suffering in vain, rather I believe that God is using me to help others, and I'm sure there is a much bigger plan than I can imagine right now. > > Well, I started blabbing, but wanted to share that someone understands how it feels to be young, and fighting this disease. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Hey , that's so great about your wife! How much CS/C does she take? Thanks, Cindi Cindi Callanan, MsT, CST, BEC RE: [ ] Social Security Good point! My wife suddenly developed sleep apnea a couple years ago! It wasn't till she had been on salt/c for about a year and then cs/c for 3 months that it suddenly went away as mysteriously as it came. We suspect it's the Lyme infection! In fact if she misses a few days of CS/C then the apnea starts to return! www.lyme-resource.com You can lead a person to a fact, but you can't make them think! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 You know, I'm not sure. I guess it might depend on how much relief the CPAP machine is providing - some of the symptomology, because it comes from lyme, isn't going anywhere - like the insomnia/narcolepsy pieces/CFS and CFS-like symptoms, adrenal fatigue -, how functional you are, etc. I'd check with your lawyer, if you have one. I hope this helps. Talk to you soon, Cindi Cindi Callanan, MsT, CST, BEC Re: [ ] Social Security Can you use apnea for disability if you have a CPAP machine? Waterloo On Mon, Oct 19, 2009 at 9:34 PM, Cindi Callanan <cindicallanan@...>wrote: > One other thing you can have the lawyers use, is chronic sleep apnea, which > creates such tremendous fatigue, one can't work, function, etc. Many of us > have it and don't even know it. I went for a sleep study last year and was > shocked... they told me I had woke up on the average of once a minute or > more all night... and had daytime narcolepsy, as well! > > Also, some of the gut disturbances, IBS, etc, might help you qualify. > > Good luck, Cindi > > Cindi Callanan, MsT, CST, BEC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 She currently does 6 ozs two to three times a day. She takes about 4-6g total of vitamin c throughout the day with meals. > Re: [ ] Social Security > > Hey , that's so great about your wife! How much CS/C > does she take? > > Thanks, Cindi > > Cindi Callanan, MsT, CST, BEC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2009 Report Share Posted October 25, 2009 Thanks so much... where do you get the CS? Cindi Callanan, MsT, CST, BEC RE: [ ] Social Security She currently does 6 ozs two to three times a day. She takes about 4-6g total of vitamin c throughout the day with meals. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 I am in Iowa and I get disability checks for my son. My process was so easy there were no appeals I had to file or anything. I did it all on line as well. From: jm.smoldt <jm.smoldt@...>Subject: ( ) social security Date: Thursday, January 14, 2010, 8:00 PM Does anyone here recieve social security disability checks for their child with Asperger's. My aunt has a son with more classic autism and she suggested we apply to help pay for therapies and transportation to therapies. Does any one else have any info about this and whether we should apply? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 We get SSI for our grandson Dillon but it wasn't for Aspergers that we originally got it for him. He has a myriad of problems that qualify for SSI disability benefits. We had him for 3 years before we finally applied for benefits. We applied online, got a phone call back from our local Social Security office telling us exactly what they needed. I mailed them all the paperwork. They called me again in 6 weeks telling me he was approved and to come to the local office to sign papers. I did and I had a check two days later. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 I applied for my older son, age 16 (AS, OCD, NOS, Tourette's and more) and had no trouble. I did it all online as well. I applied for my younger son, 5, AS, and I had to do it completely differently. I couldn't do it online, had to fill out lots of info and send in lots of info. Just yesterday I had to take him to a state appointed mental health person so that he could ask me pages of questions that they had sent him. He has to have a report to them within 10 days and then hopefully we will have an answer. We have been waiting almost 4 months. So we'll see. My older son has so many other issues but I decided to at least try. Jen > > > From: jm.smoldt <jm.smoldt@...> > Subject: ( ) social security > > Date: Thursday, January 14, 2010, 8:00 PM > > >  > > > > Does anyone here recieve social security disability checks for their child with Asperger's. My aunt has a son with more classic autism and she suggested we apply to help pay for therapies and transportation to therapies. Does any one else have any info about this and whether we should apply? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Yes - a lot of people with AS are on disability. I think there's a $2,000 limitation on assets tho. I'm holding off on applying for my son as I'm hoping that he'll be able to get a college degree and get a job. I'm worried that if I get him disability now at 18 that he'll be content to stay home with Mom and Dad forever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 If you are on social security disability, you should read this report that may affect you in the future.  There will be a period for community comments soon. http://books.nap.edu/openbook.php?record_id=12941 On Tue, Sep 28, 2010 at 11:04 PM, Daryl <dgathers2004@...> wrote: Hi - Would u please resend the link that talked about the potential changes to the Social Security disability requirements.  Thanks! ------------------------------------ Welcome to our group! If you received this email from someone who forwarded it to you and would like to join this group, send a blank email to -subscribe and you will get an email with instructions to follow. You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the group. For those of you who are members already and want to switch from single emails to digest or vice versa, visit www., click on , then on " edit my membership " and go down to your selection. The list administrator does not process any requests, so this is a do-it-yourself easy process ! Thanks for joining. You will learn and share a lot in this group! NOTE: I moderate, approve or disapprove emails before they are posted. Please follow the guidelines shown in the homepage. I will not allow rudeness, sexually  explicit material, attacks, and anyone who does not follow the rules. If you are not OK with this, please do not join the group. Forward this email to anyone who may benefit from this information! Thanks! In Health, Vergel (PoWeRTX@...) List Founder and Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Yes, I would like to know this also because I have also contemplated trying to get a part-time job due to extra bills I've incurred with my cat and surgery she needed to have. I also just had my 2nd hip replacement and Medicare only covers 80% of it. But I don't want to give SSDI any reason to re-evaluate my receiving benefits as I know I am not able to work full-time. Will be interested in hearing if was working and earning money in addition to SSDI and this was indeed a red flag! I love all the postings I read in this group and look forward to participating more now that I am on the mend after surgery. All this information is great :-) Thank you everyone!!! Neenzers > > > > Have you been making money monthly as a salary? That could be a red flag. > > > > Sent via BlackBerry by AT & T > > re: Social Security > > > > Thursday I was sent forms to fill out from SSD. They are evaluating my disability. I hope they don't take my monthly checks away. This economic climate is a crappy time to be looking for a job. > > > > > > > > > " If you are on social security disability, you should read this report that > may affect you in the future. There will be a period for community > comments soon. " > > http://books.nap.edu/openbook.php?record_id=12941 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 Hi Neenzers, I don't think what I make is considered a monthly salary. About every other month and sometimes a couple of months in a row, I give an hour (sometimes up to 2 hours, if I need an interpreter for Japanese speaking nurses) HIV/AIDS Presentation in mostly colleges 1-2 times a month for only $50-$100 depending on if it is a 1 or 2 hour presentation. I hope that isn't enough money for them to care about or a sign that I'm ready to go back to work. Yes, I would like to know this also because I have alsocontemplated trying to get a part-time job due toextra bills I've incurred with my cat and surgery sheneeded to have. I also just had my 2nd hip replacementand Medicare only covers 80% of it. But I don't wantto give SSDI any reason to re-evaluate my receivingbenefits as I know I am not able to work full-time.Will be interested in hearing if was workingand earning money in addition to SSDI and this wasindeed a red flag!I love all the postings I read in this group and lookforward to participating more now that I am on themend after surgery.All this information is great :-) Thank you everyone!!!Neenzers>> > > Have you been making money monthly as a salary? That could be a red flag.> > > > Sent via BlackBerry by AT & T> > re: Social Security> > > > Thursday I was sent forms to fill out from SSD. They are evaluating my disability. I hope they don't take my monthly checks away. This economic climate is a crappy time to be looking for a job. > > > > > > > > > "If you are on social security disability, you should read this report that > may affect you in the future. There will be a period for community > comments soon." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2011 Report Share Posted January 11, 2011 I am curious as to how some of you were able to apply and get approved for SS. I am currently on Short Term Disability at work. My Dr. was hoping for me to get back to work by 2/1. Realistically, I'm nowhere near better, but I have to go back, because the STD goes to 65% of my salary. I can't afford that. I am not responding to any medications (waiting to see if Rituxan is working, but I am getting worse every day. I am in constant pain, and I have one illness after another, and I have Dr. appts. every week. I am scared of getting fired when I do go back, even though I qualify for FMLA. I briefly looked at the SS website, and it says " Your disability has lasted or is expected to last for at least one year or to result in death. " I basically started having worse problems since last August. Who's to say that it'll last that long? What if it's temporary? What if I'm going to fight this battle long term? I know if I lose my job, I won't be able to find another one, due to pain, constant illnesses and Dr. appts. Advice? Thanks, Missie - PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 Missie, The social security process take about 6 months to get. They will pay you retroactively. But it won't be at the same salary as if you were working. Also, medicare benefits don't start until you have been on SDI for at least two years. I was fortunate as my husband had medical insurance. Social security usually denies the first bout of paperwork, I had to get help from my local Congressman after my first denial, I got it two weeks later. Marla On 1/11/2011 9:07 PM, missieph wrote: > > I am curious as to how some of you were able to apply and get approved > for SS. I am currently on Short Term Disability at work. My Dr. was > hoping for me to get back to work by 2/1. Realistically, I'm nowhere > near better, but I have to go back, because the STD goes to 65% of my > salary. I can't afford that. > I am not responding to any medications (waiting to see if Rituxan is > working, but I am getting worse every day. I am in constant pain, and > I have one illness after another, and I have Dr. appts. every week. I > am scared of getting fired when I do go back, even though I qualify > for FMLA. > I briefly looked at the SS website, and it says " Your disability has > lasted or is expected to last for at least one year or to result in > death. " I basically started having worse problems since last August. > Who's to say that it'll last that long? What if it's temporary? What > if I'm going to fight this battle long term? > I know if I lose my job, I won't be able to find another one, due to > pain, constant illnesses and Dr. appts. > Advice? > Thanks, > Missie - PA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 Marla, Concerning SDI, does it matter how long you've diagnosed with RA? Are there certain parameters, i.e. immobilization, pain, etc. I've been trying to find a job that I feel I could perform with this disease, but have yet to find one. I want to be fair to myself and my employer as I know I will have bad days and many doctor appts. However, subconsciously I feel that my life will never be like it was before RA. SDI is something my boyfriend has been suggesting for awhile, but it makes me feel like I'm giving up. Help! Heidi in Denver From: Marla <ghostladyjames@...> Subject: Re: [ ] Social Security Date: Wednesday, January 12, 2011, 2:30 PM  Missie, The social security process take about 6 months to get. They will pay you retroactively. But it won't be at the same salary as if you were working. Also, medicare benefits don't start until you have been on SDI for at least two years. I was fortunate as my husband had medical insurance. Social security usually denies the first bout of paperwork, I had to get help from my local Congressman after my first denial, I got it two weeks later. Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Vivian, I'm going to contact DVR (Division of Vocational Rehabilitation) to see what services they offer for people who need to switch their career track because of Disability. I'm sure that there is something I can still do, but I just don't know what it is. Heidi in Denver ________________________________ From: Vivian Cone <vcone@...> Sent: Mon, January 17, 2011 4:11:20 PM Subject: RE: [ ] Social Security and Heidi, I can relate. I am trying to come to terms that I can no longer do the job I used to...My hands hurt a lot and I can lift patients... I don't know what to do but I honestly don't think with my many problems any employer will hire me. Vivian in LA Quote Link to comment Share on other sites More sharing options...
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