csunshineq
06-05-2003, 07:14 PM
I am so thrilled to see this group, just from looking at some of the topics.
I was born with congential scoliosis, I also was diagnosed with Degenative Disk last year after rupturing a disk, which has left me with siatic nerve pain. I am 26 and had to stop work last year due to it...I am trying very hard to find a job right now that will work with my abilities.
MY husband has a spinal cord injury. He is 40 T-9 complte 13yr post injury...so spine issues are major in our house. He works for the local mental health center
Just wanted to say HI and hope we make some friends here
I was born with congential scoliosis, I also was diagnosed with Degenative Disk last year after rupturing a disk, which has left me with siatic nerve pain. I am 26 and had to stop work last year due to it...I am trying very hard to find a job right now that will work with my abilities.
MY husband has a spinal cord injury. He is 40 T-9 complte 13yr post injury...so spine issues are major in our house. He works for the local mental health center
Just wanted to say HI and hope we make some friends here
Sponsor
magtize
06-05-2003, 07:58 PM
Welcome csunshineq
You will find a great big loving and caring family
here with a wealth of information
Your name csunshine is what I have been waiting for. :D It has been raining for so long not sure if I
remember what it looks like
I'm sure if you have any questions someone will be around in a matter of minutes to answer
Welcome again :)
Elaine
You will find a great big loving and caring family
here with a wealth of information
Your name csunshine is what I have been waiting for. :D It has been raining for so long not sure if I
remember what it looks like
I'm sure if you have any questions someone will be around in a matter of minutes to answer
Welcome again :)
Elaine
KeithEugeneW
06-05-2003, 08:14 PM
Glad to welcome you both aboard! The knowledge and experience that can be shared here is incredible. I wish I had found it long before I did as well. We'll look forward to reading your posts and opinions as well. I personally love to see all the different experiences and responses to the same topic, because it would be pretty boring if we all had the same exact story to share, now wouldn't it!! :D
Keith
Keith
janie francine
06-05-2003, 08:47 PM
Hi csunshineq (Did I get that right?)
Welcome aboard! I, too, am relatively new here. Wish I'd found out about it a long time ago. As things go, I'm just now finding out what a mess I am -you know, just learned to live with all the pain and other issues because I didn't know (and the docs never mentioned it) I had options. Anyhow...enough kavetching from me.
This is a great place. Everyone is very dear and supportive. There's plenty of info to be shared, so don't be a stranger. And keep sending the sunshine - those of us in New England need to know it's still there (SOMEWHERE!) :)
My best to you and your hubby.
Janie Francine
aka Jeanine
[This message has been edited by janie francine (edited 06-05-2003).]
Welcome aboard! I, too, am relatively new here. Wish I'd found out about it a long time ago. As things go, I'm just now finding out what a mess I am -you know, just learned to live with all the pain and other issues because I didn't know (and the docs never mentioned it) I had options. Anyhow...enough kavetching from me.
This is a great place. Everyone is very dear and supportive. There's plenty of info to be shared, so don't be a stranger. And keep sending the sunshine - those of us in New England need to know it's still there (SOMEWHERE!) :)
My best to you and your hubby.
Janie Francine
aka Jeanine
[This message has been edited by janie francine (edited 06-05-2003).]
melanie dawn
06-05-2003, 09:35 PM
Hi csunshineq !
Welcome to our spiney family. This is truly a unique board , the compassion and friendship here is unparalleled. Everyone is supportive, and has individual experiences and knowledge to provide. It is good to see you both here, I am sure you will find yourself amongst friends here. We look forward to hearing more about you, and learning from your experiences while we share ours.
Take care and once again, welcome,
Mel
------------------
Congenital Cervical Stenosis,complicated by:
Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity
Welcome to our spiney family. This is truly a unique board , the compassion and friendship here is unparalleled. Everyone is supportive, and has individual experiences and knowledge to provide. It is good to see you both here, I am sure you will find yourself amongst friends here. We look forward to hearing more about you, and learning from your experiences while we share ours.
Take care and once again, welcome,
Mel
------------------
Congenital Cervical Stenosis,complicated by:
Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity
rollercoasterfan
06-05-2003, 10:05 PM
Hi csunshineq,
Welcome to the both of you. I am also new but I must agree with Jeanine...I wish I would have found this five years ago when my problems started.
Finally a place where people understand.
Welcome again!
Hugs,
Suzie
:angel:
------------------
ACDF 6-7 june 1998
Surgery July 2, 2003
Welcome to the both of you. I am also new but I must agree with Jeanine...I wish I would have found this five years ago when my problems started.
Finally a place where people understand.
Welcome again!
Hugs,
Suzie
:angel:
------------------
ACDF 6-7 june 1998
Surgery July 2, 2003
csunshineq
06-06-2003, 10:22 AM
Thank you all so much for the welcome, I really needed them today.
I got a letter from the Social Security office yesterday afternoon saying my claim had been denined.
OK 10 years ago when I was 16 they said I was disabled because my scoliosis was a severe as that of an adult...( there words not mine)
Now they say I am able to work as of 5/03 ...amazing I dont feel any better than I did in 4/03 lol
I am trying to laugh as not to cry, I now have DDD, a ruptured disk, and this problem with the siatic pain so I am much less able to do anythig than I was at 16...the only diffence is I now have a B.S. in Psychology and have worked. I was not reciving any fincial benifits from them but I did have medicare, so now I have no insurance and no more help from voc rehab to find a job. My husband wants me to appeal this....but I just feel like I am sick of trying to get ppl to say I am disabled, even though they say I was as a kid an I have had not got some magic pill.
Sorry just feeling very overwhelmed.
Thanks
Karen
I got a letter from the Social Security office yesterday afternoon saying my claim had been denined.
OK 10 years ago when I was 16 they said I was disabled because my scoliosis was a severe as that of an adult...( there words not mine)
Now they say I am able to work as of 5/03 ...amazing I dont feel any better than I did in 4/03 lol
I am trying to laugh as not to cry, I now have DDD, a ruptured disk, and this problem with the siatic pain so I am much less able to do anythig than I was at 16...the only diffence is I now have a B.S. in Psychology and have worked. I was not reciving any fincial benifits from them but I did have medicare, so now I have no insurance and no more help from voc rehab to find a job. My husband wants me to appeal this....but I just feel like I am sick of trying to get ppl to say I am disabled, even though they say I was as a kid an I have had not got some magic pill.
Sorry just feeling very overwhelmed.
Thanks
Karen
vickig
06-06-2003, 10:36 AM
HI Karen,
Welcome aboard to you and hubby, sorry you both are feeling under the weather. We are here for support, and comfort and also laughs, as you read posts you will find out!
I think you should appeal all the denials as they did consider you somewhat disabled at 16. May come down to attorneys involved if you have not already taken that route.
One good thing for you is you have a bachelors degree.
Have you tried to get in job market?
As far as the insurance, if you are being denied by medicare or other companies, dont add it to your stress now, after all is said and done, maybe state will help pick up some cost, if all else fails.
Let us know how things are for you Karen, we all care.
Vicki
------------------
april 2002 ACDF C 4-5, C 5-6 plate and screws
november 2002 ACDF C 3-4, no hardware (wiuld of had to move old hardware and replace again)
Welcome aboard to you and hubby, sorry you both are feeling under the weather. We are here for support, and comfort and also laughs, as you read posts you will find out!
I think you should appeal all the denials as they did consider you somewhat disabled at 16. May come down to attorneys involved if you have not already taken that route.
One good thing for you is you have a bachelors degree.
Have you tried to get in job market?
As far as the insurance, if you are being denied by medicare or other companies, dont add it to your stress now, after all is said and done, maybe state will help pick up some cost, if all else fails.
Let us know how things are for you Karen, we all care.
Vicki
------------------
april 2002 ACDF C 4-5, C 5-6 plate and screws
november 2002 ACDF C 3-4, no hardware (wiuld of had to move old hardware and replace again)
janie francine
06-06-2003, 12:14 PM
Hi Karen,
I'm SO sorry about your letter. It makes me so mad! :mad: Maybe we can all come down and beat them with our canes and neck braces. Seriously though, dealing with the system is overwhelming with all the hoops they want one to jump through. I agree with your husband and the others that you may want to appeal. You don't have to make the decision today. Give yourself an opportunity to get over the shock and huge disappointment. Then see how you feel about it. Whatever you decide is the best decision for you. Just know we're here for both of you. I'm saying a prayer for you :angel:
Jeanine
I'm SO sorry about your letter. It makes me so mad! :mad: Maybe we can all come down and beat them with our canes and neck braces. Seriously though, dealing with the system is overwhelming with all the hoops they want one to jump through. I agree with your husband and the others that you may want to appeal. You don't have to make the decision today. Give yourself an opportunity to get over the shock and huge disappointment. Then see how you feel about it. Whatever you decide is the best decision for you. Just know we're here for both of you. I'm saying a prayer for you :angel:
Jeanine
BamaPeach
06-06-2003, 12:42 PM
Welcome aboard,
Hope your day is goingbetter and Keep after em. Sometimes they will deny two to three times before approval. My brother went through that and my father before he passed as well. Just keep it up and eventually they approve. I know that does not help financially right now but it can be done.
Ginny
------------------
ACF June 18, 2003 C4-5, C5-6, and C6-7 with bone donor
Hope your day is goingbetter and Keep after em. Sometimes they will deny two to three times before approval. My brother went through that and my father before he passed as well. Just keep it up and eventually they approve. I know that does not help financially right now but it can be done.
Ginny
------------------
ACF June 18, 2003 C4-5, C5-6, and C6-7 with bone donor
csunshineq
06-06-2003, 12:44 PM
lol, at comment about coming down to beat them up with the canes.
Vicki, I am glad I got my bachlors, and have been looking for a job for the last six months or so, ever since I got back where I can get around. I got out of college in 99, went to work for the local mental health center as a case manager for children with mental retardation, I did that for two years and then ruptured the disk in my back. I have actually put back in to go back to work for the same place, but I have not heard anything back from them. As I am in very rural Mississippi, jobs are few and far between. We have thought about moving back to the Atlanta area where my husband is from, but right now he does have a job and it is hard to just walk away from that.
Hope you all are not getting this icky weather we are having here in MS today.
Karen
Vicki, I am glad I got my bachlors, and have been looking for a job for the last six months or so, ever since I got back where I can get around. I got out of college in 99, went to work for the local mental health center as a case manager for children with mental retardation, I did that for two years and then ruptured the disk in my back. I have actually put back in to go back to work for the same place, but I have not heard anything back from them. As I am in very rural Mississippi, jobs are few and far between. We have thought about moving back to the Atlanta area where my husband is from, but right now he does have a job and it is hard to just walk away from that.
Hope you all are not getting this icky weather we are having here in MS today.
Karen
magtize
06-06-2003, 12:56 PM
Hi Karen
From my experance I would call a lawyer right away and appeal it.You will get better results with one and having one will take lots of stress off you.Right now you don't need anymore stress.
They can only charge a percentage of back pay up to 25% I think and don't get paid if you don't get it.
Also I don't think one will take you if they don't think you are eligible
Hope this helps and its only my thoughts.
Will be in my thoughts and prayers
Elaine
From my experance I would call a lawyer right away and appeal it.You will get better results with one and having one will take lots of stress off you.Right now you don't need anymore stress.
They can only charge a percentage of back pay up to 25% I think and don't get paid if you don't get it.
Also I don't think one will take you if they don't think you are eligible
Hope this helps and its only my thoughts.
Will be in my thoughts and prayers
Elaine
vickig
06-06-2003, 01:13 PM
Hi Karen,
I am from south coast MS, and yes, the rain is bad here, sideways matter of fact. Good luck to you!
------------------
april 2002 ACDF C 4-5, C 5-6 plate and screws
november 2002 ACDF C 3-4, no hardware (wiuld of had to move old hardware and replace again)
I am from south coast MS, and yes, the rain is bad here, sideways matter of fact. Good luck to you!
------------------
april 2002 ACDF C 4-5, C 5-6 plate and screws
november 2002 ACDF C 3-4, no hardware (wiuld of had to move old hardware and replace again)
csunshineq
06-06-2003, 01:46 PM
Did you say it was raining sideways!!!!
Not good...I live about 2 hours north of Gulfport, have to go out this afternoon to run errands. I am helping host a bridal shower for my cousin tommrow..I am going to be spending my Friday night making dozens of melon balls and little crustless sandwiches lol.
Hope the weather is not to bad for you.
Karen
Not good...I live about 2 hours north of Gulfport, have to go out this afternoon to run errands. I am helping host a bridal shower for my cousin tommrow..I am going to be spending my Friday night making dozens of melon balls and little crustless sandwiches lol.
Hope the weather is not to bad for you.
Karen
vickig
06-06-2003, 05:32 PM
Hey Karen,
Another neighbor!!! WOW!! Didn't know the Gulf Coast was so popular. (I frequent the Grand and Copa sometimes) I will be flying out of Gulfport tomorrow morning for Pittsburgh. Have fun with your bridal shower activities (Should of bought Iron Kids bread for them there crustless sammies!!!!) HA HA :)
Have Fun and don't overwork yourself. Will post when I get back.
Another neighbor!!! WOW!! Didn't know the Gulf Coast was so popular. (I frequent the Grand and Copa sometimes) I will be flying out of Gulfport tomorrow morning for Pittsburgh. Have fun with your bridal shower activities (Should of bought Iron Kids bread for them there crustless sammies!!!!) HA HA :)
Have Fun and don't overwork yourself. Will post when I get back.
Memer
06-06-2003, 05:54 PM
Hi Karen,
C(sunshine)q. I'm trying to figure it out...
Welcome to this warm and caring haven :wave: .
I'm so sorry to hear about your DDD with sciatica and your problems finding a job. You'll be in my prayers.
[This message has been edited by Memer (edited 08-05-2003).]
C(sunshine)q. I'm trying to figure it out...
Welcome to this warm and caring haven :wave: .
I'm so sorry to hear about your DDD with sciatica and your problems finding a job. You'll be in my prayers.
[This message has been edited by Memer (edited 08-05-2003).]
Debbie2
06-07-2003, 12:16 AM
Welcome CSun... I'm with your hubby, you need to appeal your case. If SS didn't deny everyone at least once, no one who is in need would collect benefits. My sister had to appeal twice, and she's still disabled. You just have to be persistant, even if it gets old. This is your health you are talking about and you well being... take it by the horns. Or the tail... :D
We look forward to your posts and welcome you to our little part of the world.
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
We look forward to your posts and welcome you to our little part of the world.
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
franjo
06-07-2003, 04:09 AM
Hi Csunshineq, and Welcome! :wave:
Absoltely yes!! Keep appealing and don't let those deadlines for appeal lapse. As you probably already know, your Disability Award will be retroactive from the date you first applied. If you let the appeals lapse, you'll lose that retroactive payment, and have to start the whole process all over again.
My disability attorney told me that most applicants are denied, as a matter of course, 2-3 times. If I remember right, I was denied 3 times, then sought legal representation. Hang in there, jump through all the hoops, be persistent.
I know what you mean about getting sick trying to get people to say that you're disabled, especially, as far as congenital disabilities are concerned, when a person has spent most of their life trying to be just like everyone else. We don't like telling people what we CAN'T do! Sometimes we're our own worst enemy in a disability case.
I'm glad you and your husband found our little hamlet of spineys. Again, Welcome!!
~Teri
------------------
Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.
Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989
Absoltely yes!! Keep appealing and don't let those deadlines for appeal lapse. As you probably already know, your Disability Award will be retroactive from the date you first applied. If you let the appeals lapse, you'll lose that retroactive payment, and have to start the whole process all over again.
My disability attorney told me that most applicants are denied, as a matter of course, 2-3 times. If I remember right, I was denied 3 times, then sought legal representation. Hang in there, jump through all the hoops, be persistent.
I know what you mean about getting sick trying to get people to say that you're disabled, especially, as far as congenital disabilities are concerned, when a person has spent most of their life trying to be just like everyone else. We don't like telling people what we CAN'T do! Sometimes we're our own worst enemy in a disability case.
I'm glad you and your husband found our little hamlet of spineys. Again, Welcome!!
~Teri
------------------
Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.
Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989
IonMan
06-07-2003, 01:17 PM
csunshineq,
Hello,
I am pressed for time right now, but wanted to welcome you. You have found a great place for help, support, and hopefully a few smiles.
Cheers
Cliff
------------------
Cervical myelopathy with frank cord compression from bony impingement.
22 Apr 03 C5 corpectomy, a C4/6 strut graft with allograft bone & titanium hardware.
15 May 03 Heart Attack, 16 May 03 Balloon Angioplasty & Stent implanted.
Hello,
I am pressed for time right now, but wanted to welcome you. You have found a great place for help, support, and hopefully a few smiles.
Cheers
Cliff
------------------
Cervical myelopathy with frank cord compression from bony impingement.
22 Apr 03 C5 corpectomy, a C4/6 strut graft with allograft bone & titanium hardware.
15 May 03 Heart Attack, 16 May 03 Balloon Angioplasty & Stent implanted.
Catherine with a C
06-07-2003, 11:42 PM
hi Karen!!
I am sorry for the delay in my welcoming you~~ just know that I have indeed lost sleep over it!!
I do have an excuse though~~~ would you like it alphabetically or numerically!! Harrumph & Pishaw!
I wanted to extend a huge cyber-hug to you & your hubby.
I have no doubt whatsoever that you shall make some friends here. Friends without faces I lovingly refer to them as. (mind you, in some cases, people are actually hooking up!!) Ain't life grand!
I have had a couple of dreams where we all get the chance to meet together~~~~~ON OPRAH!!
Anyways, I digress!
I cannot relate to your frustration with being denied.
But, I can imagine!! Hang tough! Be patient!
Stay strong! Do not give in! Fight the good fight!
People here are on your side!
welcome again. do not hesitate to be yourself here.
Embrace yourself & your husband!!
Until later,
glad you are here.
Catherine
I am sorry for the delay in my welcoming you~~ just know that I have indeed lost sleep over it!!
I do have an excuse though~~~ would you like it alphabetically or numerically!! Harrumph & Pishaw!
I wanted to extend a huge cyber-hug to you & your hubby.
I have no doubt whatsoever that you shall make some friends here. Friends without faces I lovingly refer to them as. (mind you, in some cases, people are actually hooking up!!) Ain't life grand!
I have had a couple of dreams where we all get the chance to meet together~~~~~ON OPRAH!!
Anyways, I digress!
I cannot relate to your frustration with being denied.
But, I can imagine!! Hang tough! Be patient!
Stay strong! Do not give in! Fight the good fight!
People here are on your side!
welcome again. do not hesitate to be yourself here.
Embrace yourself & your husband!!
Until later,
glad you are here.
Catherine
csunshineq
06-08-2003, 12:02 AM
Thanks so much to all of you for your warm welcomes,,,I dont think I have ever had such a nice welcoem to a group online.
LOL..someone made the commment about this being friends without faces..I actually have met several of my online friends,,,, I actually married one of them about three years ago.
I made it throught the bridal shower...however, I bent over to set a vase of flowers down and unlock the door to the church and I felt something in my spine pop. I know what it is...and what it means..several days of not moving much.I use to go get injections when this happened but now that I have no insurace I cant do that.
Hope you all have a good weekend and thanks again for the welcomes, I am still trying to get use to this how this forum works.
Karen
LOL..someone made the commment about this being friends without faces..I actually have met several of my online friends,,,, I actually married one of them about three years ago.
I made it throught the bridal shower...however, I bent over to set a vase of flowers down and unlock the door to the church and I felt something in my spine pop. I know what it is...and what it means..several days of not moving much.I use to go get injections when this happened but now that I have no insurace I cant do that.
Hope you all have a good weekend and thanks again for the welcomes, I am still trying to get use to this how this forum works.
Karen
csunshineq
06-08-2003, 12:04 PM
[QUOTE]Originally posted by Memer:
C(sunshine)q. I'm trying to figure it out...
Welcome to this warm and caring haven [IMG]I'm so sorry to hear about your DDD with sciatica and your problems finding a job. You'll be in my prayers.
Mary,
My nic name csunshineq is a old nic I used in the chatroom I met my husband in.
I use to use Charlie Sunshine perfume ( csunshine )
My husbands nicname was wheelchairq ( the q is for the wheelcahir brand he used Quickie ) ...so when we got married ppl started calling me mrs.q so I became csunhineq. Silly I know but hope that explains it.
C(sunshine)q. I'm trying to figure it out...
Welcome to this warm and caring haven [IMG]I'm so sorry to hear about your DDD with sciatica and your problems finding a job. You'll be in my prayers.
Mary,
My nic name csunshineq is a old nic I used in the chatroom I met my husband in.
I use to use Charlie Sunshine perfume ( csunshine )
My husbands nicname was wheelchairq ( the q is for the wheelcahir brand he used Quickie ) ...so when we got married ppl started calling me mrs.q so I became csunhineq. Silly I know but hope that explains it.