|
|
 |
|
Reply
| |
My daughter began the process of applying for SSD benefits in August 2007. This was before she had been diagnosed with RSD, however, she was being treated by multiple "Specialist" and none of them seemed to know what was going on. I kept trying to get them to tell me why her leg was blue in color and very very cold. I straight up asked them if that was normal. They all agreed that it was not normal, but also could not provide her with a diagnosis. Each of them finally recommended someone else, but also did not give any sort of diagnosis. In November 2007 we finally took her to the hospital, carrying her into the emergency room as she was not able to walk that night. She laid in the emergency room for hours and the doctor kept giving her pain medication and none of it seemed to be helping. He also took x-rays of her leg and back. He kept coming in and checking on her and I figured she would once again be released without a diagnosis and sent home, however, he was not willing to do that unless she could walk out of the emergency room on her own. Thank God for that doctor. She was admitted in the middle of the night. They watched her all evening and a different doctor was assigned to her for the floor. This doctor came in and ran multiple test and than came up with the diagnosis of RSD. I was not there when she originally gave the diagnosis, but the next day I was in the room, I asked her if she was sure that it was not Fibromyalgia and she said that she was absolutely certain that it was not and again said that she was confident that it was RSD. Of course I knew nothing about RSD at that time. My daughter has now been denied twice for SSD benefits and is to appear before the ALJ now. I spoke to her attorney the other day and she feels that it may still be a year out before my daughters hearing. My daughter lives in a mobile home, not in our house, but we are attempting to help support her. She has not worked since May of 2007. She now has an excellent doctor (General MD) by the way. I am so sick of Specialist, as they all seem to have their ego in the way. The doctor that she has is definately interested in caring for my daughter, not only physically but also very understanding of her emotional ups and downs. I am so thankful for her. She has done a lot of research on RSD since she began working with my daughter. When I signed up for this support group, I was not at all sure that the group would do anything for me. But in reading everyone's dilemna I realize that everyone with RSD has a tough time and each person needs to just work hard to get through each event in their life. It also makes me take pause on people that are fortunate to have good health. Wish they would see each of you and realize how much they should treasure their health. |
|
 First
Previous
2-11 of 11
Next
Last
|
|
Reply
| | From:  lgs131 | Sent: 9/16/2008 1:56 PM |
Getting SSD benefits seems to vary wildly throughout the country. I live in Westchester County, NY and my son applied for SSD on 02/13/07, had an interview with them on 3/15/07, returned a long questionnaire to them on 4/16/07 and received his first check from them a few months later. He had already been diagnosed with RSD and we had a lot of reports about his illness and many different doctors had confirmed his diagnosis. In fact, the SSA interviewer was quite dismissive of the doctor my son had originally seen who told my son he had nothing wrong with him. We have been told that the federal government considers RSD to be incurable. If true, it should help one's case for getting benefits. As for hearings, we did not need one for SSD but have had 3 for workers' comp benefits. We won every time. WC no longer seems to bother requesting a hearing. I think we were very lucky with our judge who was angry with the insurance company when they did not comply with one of his orders. I now communicate directly with our claims adjuster (the sixth one on our case) and don't bother to get our WC atty involved since that takes too long. But still it takes many phone calls to get anything approved and we are still waiting to get reimbursed for the stair lift we just put in. Also, the pharmacy is having trouble getting approval for the last prescription for methadone which my son has been on for nearly two years. I think they deny a drug every so often to see what the reaction is (the pharmacy told me this). It all takes a lot of time and energy and I do not see how any one who is ill could possibly do it all. Confused_Mom - good luck with getting SSD. I related our experiences with hearings to give you hope that you will get a ruling in your favor - we always did with our WC claims. Also, now that your daughter has been diagnosed with RSD I hope getting SSD will be easier. I just hope you get a good judge. Good luck, Linda |
|
Reply
| |
Thank you for just reading my spouting off. Some days I am so tired of all of it and I feel like just going to sleep and not have to wake up again. I also have heart problems, so my daughter having RSD also makes me weary. I don't really want to feel sorry for myself, but there are days/weeks that I am just tired. I know that sounds selfish, but I get up each day and start over. I love my daughter very dearly and would do anything for her and want to cry every time something new comes up that is wrong. Today she had an Ultra sound of her stomach area. Just had her gall bladder out in June and is still having problems following the surgery. Next week a EDG has been ordered for her. That is putting a camera down her throat and looking at her insides. Another Specialist. Okay so now I have sounded off hopefully my attitude will get adjusted. I guess I should really be thankful that she is not as bad as some of the other people that have RSD but I would really like a period of time that life became boring again. |
|
Reply
| | | From: lgs131 | Sent: 9/18/2008 2:43 PM |
Confused Mom, I do not think you sound selfish at all. Being tired dealing with someone who has RSD is just reality not selfishness. This list serve is somewhere where you can find others who feel like you. It is not only the physical exhaustion of fighting WC (and/or SSA) and taking your child to doctors all the time etc.; it is also the emotional toll of seeing someone you love in constant pain and being unable to do as much to help them as you would wish. I also have my 99 year old mother-in-law living with us who is often in pain and for whom I also can't do much to alleviate the pain. However, it is normal for people in their 90's to have health problems. It is not fair to see your child leading the life of someone in their 90's. So, do not think of yourself as selfish. Linda. |
|
Reply
| |
So sorry to hear about all the trouble that your daughter is going thru. sometimes it's almost like my godness isn't it bad enough that a person is going thru all that RSD puts you thru on a daily basis and then you have to deal with all the other. Legal and medical stuff that RSD throws our way. some days it's enough to really get you down. I know it does for me. I have a pretty good support group at home my, husband and my two children who are only 13, and 11. Tell your daughter to hang in there. And my hubby always tells me when I'm all worked up.... remember it's a game and, you just have to play the game better then them. Take care, Michelle |
|
Reply
| |
Mom, you are such a great mom. i don't think that i would have made it this far without you and dad. you have been by my side through alot in the past 22 years and i really appreciate it. i love you so much as well dad. your support means the world to me. you don't sound selfish. each person has a different point of tough time getting to them as well as pain levels. everything has a silver linning sometimes it just takes a while to find out what that is. i am so sorry that i am making you worry so much and that i am costing not just money but physically, mentally, and emotionally. i love you. |
|
Reply
| |
| in england no 1 realy understands RSD it seams more ov the USA get it seams strange !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1 |
|
Reply
| |
Hi there, did you know it is a federal law that allows all people with RSD SSI, or SDI benefits. It took me 2 years to get SDl, but when I did, I also got back pay in a huge amount, and also for my daughter who is 15 now. Please let me know how it goes. I have a really good pain management specialist in Chico, CA. I also did ECT treatments, and am all done now. It helped me immensely! I lift weights, and fish all the time. I even care for a man who has Cerebral Palsy. Bless you and yours, Sylvia |
|
Reply
| |
I've gotta ask you as I'm appealing the deciscion for Disability right now for SSD. I need to know if you know what the governmental "code" is for RSD, that is in their system basically proving that it's an approved disability??? I'm working on getting the people evaluating my appeal directly as I'm being very persistant on each step of the appeal, but now that I do know it's approved federally, I need to know the "code" that the government uses to show Reflex Sympathetic Dystrophy is a federally approved/mandated disability....This would make my life 100000 times easier!!! Thanks in advance for any replies/help...
~Phil |
|
Reply
| |
Squeezing hugzzz Mom,,,, I commend you for caring n helping your daughter soo very much.. No is not in anyway selfish of you at all. Being sick,,,, takes alot of energy out n just wants the norm whatever that is too come in n settle things down. The insurance companys n the whole lots of them expects n demands too much of us sick ones. It is soo wrong. One day,,,,, hopefully sooon,,,,, their hardness n demands will become nitemares too themselves. that we can rest assured of. Sickness will come into thier family. then and only then thier fight will begin. And they will become part of their own creation. That I rest assured in n then only then more changes will come for us. Please know that. And till then it is trial by error of work too find the comfort zone that helps us out. Me ,,,, I do not trust all the drs words or chemicals that they put into our bodies. Especially at the costs of money especially when naturals can take its place n be more effective and with less side affects. I for one am really hating side affects that they put on n thru us. So that is my feelings n doings. I cannot see what the fda is doing for us except keeping our costs up n keeping us broke. that is the whole of the fda purpose. Sorry that is a sore spot with me.... FDA purpose is. O well tite hugzz dear!!! No more being selfish or guilty at all. Know that u have too take care of yourself in order too help your daughter. That is what counts.... U BOTH ,,,,, count!!!!! |
|
Reply
| |
| Could you give me more information on this law. My husband has RSD and we are appealing the denial letter from Social Security. If I had some ammunition, it would be helpful. |
|
|
|
First
Previous
2-11 of 11
Next
Last
|
|
|
Free Forum Hosting
Important Announcement
Return to General