futurehope Posted March 9, 2004 Report Share Posted March 9, 2004 Well, folks. Here I go! I feel like I'm heading into the unknown. I've applied for SSDI (Social Security Disability) and for a disability retirement from my place of employment. (I happened to have worked at the Social Security Headquarters as a computer programmer before I left my job.) The upshot is, they (SSA) have refused to give me disability retirement. I appealed this once. Also, I've been refused SSDI. I've appealed this twice. So, here goes! I figure it's Social Security that expects me to work, so they, of all people, should help me (in whatever way they can) to stay employed with them. I spoke to my personnel person about my situation. I will try to go back 3 days/week, 8 hours/day. That's what I left. I really do NOT think I can sustain the job. The personnel lady then suggested "work at home by exception". I may be able to work at home, but I know for a fact they would have to give me a different job since the job I had would not allow me access to the data from at home. Anyway, I don't know when I start yet. Boy, is my former boss going to be surprised to hear from me again after about 11 months. (That's when I left.) He's probably figuring ,"When can we get this lady out of our hair?" What choices do I have? Either they believe I can't sustain a job (they don't believe me now), or they're going to have to see for themselves. I must say, my life is certainly interesting. Nothing "normal" about it. Anyway, here goes! I certainly will NEVER forget all the wonderful people and support I've gotten from this board. I'll probably still be checking in on this forum, but knowing me, I won't have much energy left once I start working. You're all great and you're always going to be on my thoughts. Hang in there. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 9, 2004 Report Share Posted March 9, 2004 Dear futurehope, what a suitable name, especially now! I am so excited for you and want to wish you success and happiness in this next venture. I think you will be a valuable asset where ever you work, whoever you work for! Be sure to be gentle with yourself as you take on these new responsibilities. We are always here for you. In good, bad, mixed, unsure times...pop in and keep us "posted". My best wishes for your success, prosperity and good health. Until next time... tearose Quote Link to comment Share on other sites More sharing options...
EarthMother Posted March 9, 2004 Report Share Posted March 9, 2004 Dear FutureHope,Hugs and warm thoughts your way. If they permit some people to work at home, you can make a good case for doing some of your job from home as well. However, getting past the "security" red tape of the company's computing department is almost as difficult as getting SDI! Though it can be done. Throw some words around like "secure connection through a VPN" and they'll think twice about dismissing the issue without serious consideration. Computing people are a strange bunch ... 3 guesses what I do for a "living". :-)Changes I made at the office include a couch, softer lighting, a space heater AND a fan plus a wireless keyboard and mouse that I can take over to my couch and use lying down if need be. It's strange ... but that's doesn't seem to surprise anyone.Please check back as you can -- this site is often a wonderful source of inspiration and hope for me on the good days and bad.Good luck on your new adventure.EM Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 9, 2004 Author Report Share Posted March 9, 2004 EM, You've got my curiosity aroused. Are you in data processing too? I don't even know what you mean by a VPN connection? Also, the idea of a couch and a mouse that is not connected to the computer? That sounds so neat. That sounds great. There really is such a thing? And the keyboard does not need to be connected to the computer? What kind of a setup is it? It sounds too good to be true. Tearose, Earthmother, Thanks for your kind wishes. Quote Link to comment Share on other sites More sharing options...
denabob Posted March 9, 2004 Report Share Posted March 9, 2004 Good Luck , I hope you do well either working or showing that you cant. You are at least in a position for them to see first hand how hard it can be! Hopefully they can help make it less of a struggle for you. We will pray for you and I wish you the best. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted March 9, 2004 Report Share Posted March 9, 2004 Here's a link to an example of the cordless keyboard and mouse:http://www.officedepot.com/ddSKU.do?level=...01013_SK_159499This one was less than $60. I manage a computing department, and I know all of the "buzz words" we as techies use when we want to make something hard for people. Mind you, my staff know that with zen-mother at the helm we don't play that game. However, I frequently hear stories from other computing people who use the "Oh no, they can't have access to our system from home for 'security' reasons" excuse. I've never seen a "security reason" that didn't have a technical solution. These are bright people, they can figure out a cost effective way to provide secure data connections to people so that they can work while away from the office. They just need to have someone high up in the organization saying "make it so."Good luck finding the right people and the right adaptaphones to make new things possible for you.Feel free to drop me a line anytime. I may be able to help decipher the acronyms they throw at you.EM Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 10, 2004 Author Report Share Posted March 10, 2004 Thanks, Denabob. You're so sweet! Quote Link to comment Share on other sites More sharing options...
denabob Posted March 10, 2004 Report Share Posted March 10, 2004 aawww shucks! no problem! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 10, 2004 Report Share Posted March 10, 2004 Good luck with everything--I hope it works out whatever way will give you the best overall outcome. Nina Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 10, 2004 Author Report Share Posted March 10, 2004 Hey, Nina,You're an inspiration. Thanks for the good thoughts. Quote Link to comment Share on other sites More sharing options...
Jackie Posted March 10, 2004 Report Share Posted March 10, 2004 If they allow you to work from home it might be a feasible solution. The only way I'm working is because I work from home with a completely flexible schedule as a medical transcriptionist. I thank God I have this opportunity but sometimes forget to be grateful for the opportunity because work is still work and it is hard sometimes to sit at the desk and do it. The wireless keyboard and mouse thing sounds like a wonderful idea too! I have a laptop computer so if it came down to it I suppose I could prop myself up on the couch and type. Either way I know this is going to work out for you because either they will have to help enable you to work since they believe you can or they will have to accept the reality that you can't and this is their catch-22 situation and not yours. Best of luck and please do keep us posted. I wish you much success and strength as you endeavor through this challenge. Either way it is going to work out...you will either be able to work and that is great or you will not and that is okay too and they will have to provide the disability. Just do what you can and let it all fall into place. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted March 10, 2004 Report Share Posted March 10, 2004 I wish you the best, Futurehope! I do hope they are willing and able to accomodate your needs. Michelle Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 10, 2004 Author Report Share Posted March 10, 2004 You're all so sweet! I honestly did not feel I had a choice. "Just go home and forget about it." was not a choice in my book. I have a footnote. My disability attorney has just told me that SSDI gives a person a "9-month" trial run to "see if they can work." The upshot is, I'm trying. If it works out for me, great! If it doesn't work out for me, great too, as Jackie said. I've tried. Quote Link to comment Share on other sites More sharing options...
denabob Posted March 11, 2004 Report Share Posted March 11, 2004 my lawyer told me that it was a real benefit to me that I fought so hard to stay working! The Postal Service forced me into med ret. and I fought kicking and screaming the whole way in the end though I had to admitt that I was a safety hazard. But Soc Sec couldnt deny that I had done everything in my power to try and work....this was a LAST resort! I really hope you can handle it but if you cant then you've showed your willing to try and there's no shame in not being able to work. Contrary to popular belief this isn't "in our head"!!! Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 11, 2004 Author Report Share Posted March 11, 2004 Denabob, You've given me very encouraging thoughts. I am a fighter too and I'm also hoping that if they see in PERSON how difficult it is for me, they will then KNOW what it's like and that I've given it my best shot. I figure it's a win-win situation. I win if I'm employed, I win if they realize my disabilities and give me SSDI. I cannot tell you how supportive and caring and wonderful everyone is on this forum. It means so much to know there are other people out there who UNDERSTAND. I'm so grateful for that.Nancy Quote Link to comment Share on other sites More sharing options...
geneva Posted March 11, 2004 Report Share Posted March 11, 2004 All the best to you! You are very brave to pursue this with the determination you are showing and know that you have all of us here to support you on those inevitable days when "they just don't GET IT!". And how about Earthmother, who would have known that she is our computer expert!! I have known hundreds of computer technicians and I must say that I would NEVER think of any of them as ZEN-like. Maybe we should do a post to see what career everyone has or had some day! I digress...Do your BEST and don't ask more of yourself than that. Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 11, 2004 Author Report Share Posted March 11, 2004 Thanks, Geneva. Once you have been diagnosed (or have symptoms of) dysautonomia, you certainly have to come to terms with the fact that YOU consists of more than your "personna at work". We are NOT defined by our work. We just happen to work in a certain field or perform certain tasks. That is one lesson I've had to learn. Whether I work or not, I am still a valuable human being. That was a difficult lesson for someone as independent me. Quote Link to comment Share on other sites More sharing options...
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