Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Hey Mindy- Sorry to hear about your drama with disability. It sounds like you need to get back into the doctor and have a heart to heart. If you are like you are explaining, you should be medically disabled and if your doctor is not sympathic to your symptoms, you need a new doctor. I was 33 years old and filed for disability about a year later after suffering from muscle and bone pains, extreme fatigue and weakness. I was approved right away. I did stay on top of my case, touching base with the lady who had my file. I wanted her to here my voice and know me well. I didn't want to me a name on a folder on her desk. If you need to need to talk or ask questions, I am available. Where do you live? And what meds are you currently on? RN CML 5/13/05 Wife and mother of 3 (14,11,9) Currently Sprycel 100mg In a message dated 1/12/2010 8:45:34 P.M. Central Standard Time, mindy@... writes: I've been a member here for some time, but I've only quietly watched from the sidelines as I am not good at speaking up very well. However, I just received some news about my disability benefits and I have some questions and don't know where else to turn right now. I was on my way to my second back surgery in Oct 2008 when I was diagnosed with CML at age 35. I was heavily drugged for back pain until Feb 2009 when they did my surgery and then spent a rough 3 months coming off all the pain meds. I fortunately had a disability policy and started with benefits at that time. During this time, we lost our business and insurance and I had to move to Texas and work for my sister (a little of this and that) to re-establish insurance. My disability benefits continued as I still had a loss of income and in Aug 2009, I returned home with insurance through state continuation until Feb 2010. I have continued looking for a job, but I don't think physically I could handle much right now. My back is still touchy, flaring regularly and sending me to bed at least 1 day a week and I can't manage a " normal " day as far as sitting - the muscles are still so weak, the nerves are still healing, and I have cramping, pain, etc. The last info reported to disability was that I could return to work with restrictions if my back was stable, but it wasn't consistantly stable now. Also, I am EXHAUSTED most of the time. I joke that I have about 4 good hours a day, but it's not far from the truth. My oncologist told me when we discussed in November that I would have to slow down to accomodate this - that I had cancer and was being treated with strong meds that would also slow me down, but he sent a statement to the disability company that I could return to work with no restrictions with regards to my CML. Disability called today and said that as far as they are concerned, based on doctor statements, I can return to work and they are about to close my case. When I explained that I didn't think I could find a job that would give me a day or more a week to stay in bed because my back was flaring, he suggested that I go back to the doctors for updated, more detailed health statements. I'm at a complete loss right now. I have (at least I thought quite clearly) communicated my limitations to my doctors, and I don't feel at all capable of returning to work, except maybe part time as my back will tolerate. Has anyone had any experience with disability and if so, do you have any advice for me? Mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 My oncologist is my first call tomorrow and right after that is the back doctor. I wasn't expecting such a disconnect from the office visit to the reports filed, but maybe there is a misunderstanding. I don't know my oncologist very well as he is my third with all my insurance and moving changes and I've only seen him twice, but he seemed to understand during our last visit the extent I was struggling with the exhaustion and other side effects. I'm fortunate that the bone and muscle pain from the Gleevec is gone (it was bad to start with), but I'm left with the back stuff. I live in Denver and I'm taking 400mg of Gleevec. Thanks Mindy > > Hey Mindy- > > Sorry to hear about your drama with disability. It sounds like you need > to get back into the doctor and have a heart to heart. If you are like you > are explaining, you should be medically disabled and if your doctor is not > sympathic to your symptoms, you need a new doctor. I was 33 years old and > filed for disability about a year later after suffering from muscle and bone > pains, extreme fatigue and weakness. I was approved right away. I did > stay on top of my case, touching base with the lady who had my file. I > wanted her to here my voice and know me well. I didn't want to me a name on a > folder on her desk. > > If you need to need to talk or ask questions, I am available. Where do > you live? And what meds are you currently on? > > RN > CML 5/13/05 > Wife and mother of 3 (14,11,9) > Currently Sprycel 100mg > > > > In a message dated 1/12/2010 8:45:34 P.M. Central Standard Time, > mindy@... writes: > > > > > I've been a member here for some time, but I've only quietly watched from > the sidelines as I am not good at speaking up very well. However, I just > received some news about my disability benefits and I have some questions and > don't know where else to turn right now. > > I was on my way to my second back surgery in Oct 2008 when I was diagnosed > with CML at age 35. I was heavily drugged for back pain until Feb 2009 > when they did my surgery and then spent a rough 3 months coming off all the > pain meds. I fortunately had a disability policy and started with benefits at > that time. > > During this time, we lost our business and insurance and I had to move to > Texas and work for my sister (a little of this and that) to re-establish > insurance. My disability benefits continued as I still had a loss of income > and in Aug 2009, I returned home with insurance through state continuation > until Feb 2010. > > I have continued looking for a job, but I don't think physically I could > handle much right now. My back is still touchy, flaring regularly and > sending me to bed at least 1 day a week and I can't manage a " normal " day as far > as sitting - the muscles are still so weak, the nerves are still healing, > and I have cramping, pain, etc. The last info reported to disability was that > I could return to work with restrictions if my back was stable, but it > wasn't consistantly stable now. > > Also, I am EXHAUSTED most of the time. I joke that I have about 4 good > hours a day, but it's not far from the truth. My oncologist told me when we > discussed in November that I would have to slow down to accomodate this - > that I had cancer and was being treated with strong meds that would also slow > me down, but he sent a statement to the disability company that I could > return to work with no restrictions with regards to my CML. > > Disability called today and said that as far as they are concerned, based > on doctor statements, I can return to work and they are about to close my > case. When I explained that I didn't think I could find a job that would > give me a day or more a week to stay in bed because my back was flaring, he > suggested that I go back to the doctors for updated, more detailed health > statements. > > I'm at a complete loss right now. I have (at least I thought quite > clearly) communicated my limitations to my doctors, and I don't feel at all > capable of returning to work, except maybe part time as my back will tolerate. > Has anyone had any experience with disability and if so, do you have any > advice for me? > > Mindy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hello everyone,  After being denied twice by disability and the appeals I got an attorney and contacted by Governor as well as Senator of the state of SC. My lawyer agreed after we won our case(17 months{from begining to end process) that they never saw a case go thru quite so fast. I really think it made a huge difference getting the Govenor and Senator to keep calling and writing letters to see how far my case was progressing. I was put on Gleevec 400 mg for the first 10 months, and I can tell you my side effects were so bad I showered a changed pajamas, and basically only left the house for Dr appointments, or if I needed something from pharmacy. It was awful! I had almost every side effect possible. After 10 months I went to a Onc in NY who tried me on Tasigna. I currently am still on Tasigna, and for me it's alittle better. I still get bone pain quite often, exhaustion, headaches, nausea, dizzy spells. I am a different person then I was prior to the meds after diagnosis, but at least very much alive, and fortunate to have a wonderful, loving and supportive husband. Sometimes I feel like I am trapped in a 90 year old body. I don't have a very productive life, but I still feel blessed. If you have any questions don't hesitate to email me. Good luck, Peggy From: mindyfacey <mindy@...> Subject: Re: [ ] Disability---Mindy Date: Tuesday, January 12, 2010, 11:19 PM  My oncologist is my first call tomorrow and right after that is the back doctor. I wasn't expecting such a disconnect from the office visit to the reports filed, but maybe there is a misunderstanding. I don't know my oncologist very well as he is my third with all my insurance and moving changes and I've only seen him twice, but he seemed to understand during our last visit the extent I was struggling with the exhaustion and other side effects. I'm fortunate that the bone and muscle pain from the Gleevec is gone (it was bad to start with), but I'm left with the back stuff. I live in Denver and I'm taking 400mg of Gleevec. Thanks Mindy > > Hey Mindy- > > Sorry to hear about your drama with disability. It sounds like you need > to get back into the doctor and have a heart to heart. If you are like you > are explaining, you should be medically disabled and if your doctor is not > sympathic to your symptoms, you need a new doctor. I was 33 years old and > filed for disability about a year later after suffering from muscle and bone > pains, extreme fatigue and weakness. I was approved right away. I did > stay on top of my case, touching base with the lady who had my file. I > wanted her to here my voice and know me well. I didn't want to me a name on a > folder on her desk. > > If you need to need to talk or ask questions, I am available. Where do > you live? And what meds are you currently on? > > RN > CML 5/13/05 > Wife and mother of 3 (14,11,9) > Currently Sprycel 100mg > > > > In a message dated 1/12/2010 8:45:34 P.M. Central Standard Time, > mindy@... writes: > > > > > I've been a member here for some time, but I've only quietly watched from > the sidelines as I am not good at speaking up very well. However, I just > received some news about my disability benefits and I have some questions and > don't know where else to turn right now. > > I was on my way to my second back surgery in Oct 2008 when I was diagnosed > with CML at age 35. I was heavily drugged for back pain until Feb 2009 > when they did my surgery and then spent a rough 3 months coming off all the > pain meds. I fortunately had a disability policy and started with benefits at > that time. > > During this time, we lost our business and insurance and I had to move to > Texas and work for my sister (a little of this and that) to re-establish > insurance. My disability benefits continued as I still had a loss of income > and in Aug 2009, I returned home with insurance through state continuation > until Feb 2010. > > I have continued looking for a job, but I don't think physically I could > handle much right now. My back is still touchy, flaring regularly and > sending me to bed at least 1 day a week and I can't manage a " normal " day as far > as sitting - the muscles are still so weak, the nerves are still healing, > and I have cramping, pain, etc. The last info reported to disability was that > I could return to work with restrictions if my back was stable, but it > wasn't consistantly stable now. > > Also, I am EXHAUSTED most of the time. I joke that I have about 4 good > hours a day, but it's not far from the truth. My oncologist told me when we > discussed in November that I would have to slow down to accomodate this - > that I had cancer and was being treated with strong meds that would also slow > me down, but he sent a statement to the disability company that I could > return to work with no restrictions with regards to my CML. > > Disability called today and said that as far as they are concerned, based > on doctor statements, I can return to work and they are about to close my > case. When I explained that I didn't think I could find a job that would > give me a day or more a week to stay in bed because my back was flaring, he > suggested that I go back to the doctors for updated, more detailed health > statements. > > I'm at a complete loss right now. I have (at least I thought quite > clearly) communicated my limitations to my doctors, and I don't feel at all > capable of returning to work, except maybe part time as my back will tolerate. > Has anyone had any experience with disability and if so, do you have any > advice for me? > > Mindy > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.