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Posted 2/15/2010 2:57 PM (GMT 0)
I received a letter the other day from the Social Security Disability board and yet again I was denied! What do these people want anyway? In their letter they said that I was highly trained and that I could find another job "where I didn't have to move my left arm above my head". Well that's just peachy because I still can't lift my arm above my waist and my shoulder replacement was Aug.26,2009. I am in such horrible pain that some days I can barely stand it. The fibromyalgia has really gone into high gear and sometimes I just lay in the floor trying to stretch or cause pain in another place so I can think about it instead of thinking about my shoulder. Saturday night I was up all night, crying and laying on the kitchen floor just rolling around so as not to wake up my husband. I tried to go without the Fentanyl patch because let's face it...if I'm using those now and get immune to that med then what next? If I get cancer or something they will not be able to "make me comfortable". I'll just be screwed again. I finally did put on the patch last night (it had been a week since I used the last one)) and I do feel better but now I have that "hang over" feeling from lack of sleep and exhaustion. My attorney was just furious that they denied the disability. He said that in all of his 35yrs of this type of practice, he has never had a case like this that  should have been granted the first time and certainly should have gone through the second time. He is going to ask for a hearing so that then maybe I can get this over with. I almost never leave the house and I usually run around her with a sleeveless nightgown on so that the clothing doesn't touch my arm.  One of these days I'm going to go out into the snow naked and make snow angels! Maybe that would help. The neighborhood would be totally grossed out for sure. I am so exhaused from living this way. I have an appt. with my internest today and hopefully I can go to this pain management group that is associated with my neurosurgeon and see  what they have to say. We are also thinking about going back to the Mayo Clinic in Jacksonville, Florida. I just know that I need help@

Nurse 2

Posted 2/15/2010 3:17 PM (GMT 0)
Nurse2,

I'm so sorry to hear that you were denied disability again! If anyone should get it, you should! You've been through so much! Don't give up yet, keep fighting!

Hopefully you make out well at your doctors appointments. I'm sorry that you are still in so much pain! I was hoping that because we hadn't heard from you in a while, things were better. Maybe the doctors down at the Mayo Clinic will have some ideas for you! Don't give up all hope!

You're in my thoughts & prayers! ((((((((((((((nurse2)))))))))))))

Skeye
Posted 2/15/2010 3:53 PM (GMT 0)
Awe, so very sorry about that. Please try to keep fighting it like Skeye said, it will be worth it and it seems like you have a good attorney on your side.
Prayers that you get a low pain day soon, and lots of soft hugz..
wish Iknew what else to says that would help you out..
(((((((((((((((((((((((((((((((((((((((((((Nurse2))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
Posted 2/15/2010 4:38 PM (GMT 0)

   Nurse2, Lets hope your Attorney can find some closure for you on this. There is no good reason for you to be denied on this. There is something really wrong with the system, and it needs to be addressed in the media. I'm so sorry that you have had to go through this, and many more like you. It is ashame!

         Michael

Posted 2/15/2010 5:06 PM (GMT 0)
It seems pretty much par for the course with SSI. You have to take them to court to get them to pay disability benefits unless you have a terminal illness then they will approve it first go around because they know the odds are you won't live long enough to see the first check.
Posted 2/15/2010 5:52 PM (GMT 0)
I am so sorry that you were denied. I was too. I have gotten somewhat better since then though and was able to work a part time job for a while. I was so proud of myself. As posted above, let the attorney worry about it. I am sure he will get you your disability. Hang in there. We are all behind you in this. You deserve the benifits.

Hugs, karen
Posted 2/15/2010 6:34 PM (GMT 0)
I get so upset when I hear of a case like yours. I will be the first to admit that I am not very knowledgeable about SS Disability procedures/guidelines, etc., but when I see someone like you, who obviously needs this assistance, get denied - my blood boils. I know of 2 people who receive these benefits - and their disease is alcoholism! Now, like I said, I do not know much about the requirements to receive these benefits, but I DO know that with the people that I mentioned, the effects of alcoholism are their only 'disability'. Alcoholism is a disease, but it is a self-inflicted disease. Yes, alcoholics (and other addicts) deserve help/treatment, even when they cannot afford it. But I really have a problem with that help being a monthly check. Ok, sorry to get on a soapbox - I'll stop now. Nurse2 - I really hope that you get what you are entitled to, what you deserve - please don't get discouraged - KEEP FIGHTING!!
Posted 2/15/2010 9:41 PM (GMT 0)
Nurse2,
I can't post the language on here that would describe how frustrated I am for you! I know I am bracing for denials, because that's par for the course, but it doesn't make it any easier, especially if you've got nothing to buy food with or pay the heating bill. GRRRRRRRRRR!!!!

Ok, I'm taking a breath here. From all you're going through and describing, I wonder if you're being treated for depression, too. I'm not trying to say this is all in your head, or you're mentally ill or anything, but I know I'm taking an anti-depressant as are many here with CP. It comes with the turf for most of us, both due to psychosocial reasons, and physiological. The reason I mention this is that I think others have mentioned sometimes it's actually easier to get SSD if you're being treated for a psychiatric condition, and depression would surely count.

As soon as spring pokes its head up and the driving conditions improve, I'm going to drive the 3 hours to see a psychiatrist who is going to help with both depression and pain management, and he's also agreed to help me with SSD. So even though a couple of years ago I would have fought it, I am going to make sure depression is one of the reasons - along with the rest on my list - for requesting disability.

Maybe it would help - and it likely wouldn't be making anything up! I'm sure this doesn't exactly brighten your mood!

I am glad you've got an attorney, and I hope he can do something to help you soon!

Hugs,

PaLady
Posted 2/15/2010 9:56 PM (GMT 0)
i believe i was granted ssdi for my mental health, depression etc vs. my chronic pain etc. if depression is one of your disabilities, treat it and claim it! If you have depression it helps to see a psychiatrist for ssdi.


Remember that the key to getting ssdi is explaining what you can not do , not why.

So it doesnt matter what your diagnosis are, its how they affect you! at least this is what I understand.

thats my only tip.
Posted 2/16/2010 4:20 AM (GMT 0)
Nurse2
I know exactly what your are going through, I had to go thruough two hearing with two different judges, it was a nightmare, and maninly it was because of all my former training, that I had received when I was in the military. and after I got out, and went to school to become a nurse, at the first hearing the judge flat said I was not qualified for disibility. My lawyer had me reapply and we started all over again, and it was after the second hearing that it got approved. It really had nothing to do with my medical condition, as my lawyer said I had an outstanding case medically, it was my age at the time and all my previous education and training that was the problem with mine. I was very discouraged, but my lawyer just kept telling that it would all be OK in the end, it just had to play its self out! He was right, but it was nerve racking and s very painful process, because I took each rejection very personally! I mean after all can't they see or understand all the pain I am in and that I just can not do these things anymore? What do they want from me? How can I make them understand? Do they think I am faking and want to be this way? I would do anything to be able to work again and be whole! These are things I felt, and much much more.! Hang in there nurse2 I can empathize with you!
I do wish you all the best!

White Beard
Posted 2/16/2010 6:40 AM (GMT 0)
Nurse 2,

 I'm sorry to hear that you got rejected again. It sounds like you're doing everything like you should. The problem is that you have all these people who are on disability who really don't need to be so it makes it hard for people like us to receive it. I went 3 years trying to work in the medical field(I'm and LPN) after my back surgery because my doctor at the time said I'd never get disability because of my age. Thankfully I somehow managed to get on the first time I tried. Don't ask me how I was expecting to get turned down. Something my lawyer had my doctor feel out is this long questionaire about what I could and couldn't do at any type of job whether it be a standing or sitting. He answered things like how long I could sit in one position before I needed to move or stand up, How long I could bend over in one position, whether or not if I could spend a whole day moving things below and above my head. He even noted that I would need a 15 min break every hour to either lay down or walk around. It also asked about my personal life. How far could I walk before having to stop and take a break. Could I do the houswork or make dinner without help or having to take a break. Like Merrygirl said you don't need to explain your diagnosis you need to explain how it affects you at everything not just at a job. Best of luck!

Posted 2/16/2010 9:42 AM (GMT 0)
Nurse 2,

 

My heart goes out to you as I know you have suffered so much for so long. I am glad that you have an atty helping with your claim, let him handle things and try to let him worry for you, I know easier said than done. Do not take it personal that SSD rejected your claim, this is typical of them. I worked as a paralegal over 20 yrs and handled many SSD claims on our cleints. This is typical of them to deny the claim. Once you get a hearing before an ALJ it is a different ballgame. One thing I will suggest that you do is try to get a job description from your last employer. That can be very helpful at a hearing for your atty. Talk to someone in human resources about obtaining a job description.

 

I noticed in your post that you are not using your pain medication as prescribed. Oh, you can't do that, no wonder you are in horrific pain and unable to sleep. You need a constant flow of pain medication in order to stay on top of the pain not under it and that is what is happening here. Yes, the patch was designed for cancer patients when it first came out, then they started using it off label for other conditions. I would not worry about "what if", seems to me trying to have some quality life right now is more important than worrying about something that may never happen. Not using good pain control for that reason is not realistic. Why not ask your current dr for some other type of pain meds since you are not comfortable using the patch. I hate to see you suffer needlessly. I do know that shoulder surgery is one of the worst for terrible pain after surgery. I just think there is more that can be done to get the pain under control but you have to be willing to use the the medication. If you are trying to get into a pain mgt dr one thing they do insist on is taking your medication as prescribed. They often do drug testing to see how much of the pain medication is in your system, that tells the dr if you are taking your medication or not. Please reconsider and use the pain patch as diredted until you can see a PM dr. I do worry for you as I know the pain has been unbearable.

 

Keep us posted on how you are coming along.

Posted 2/16/2010 11:04 AM (GMT 0)
Sorry to hear you got denied, Nurse. I'm in the same boat with you only I'm just starting my appeal process. All I can say is good luck and wish for the best. I don't think there is any magic thing anyone can do with the system that is in place.

Do make sure you follow all your doctors orders though. Non-compliance with doctors orders could be a no-no to the ALJ.

My lawyer told me that only about 10% will be approved during the appeal process. Stinks doesn't it!!!!
Posted 2/17/2010 5:48 AM (GMT 0)
Thanks for all of the kind comments and advice. I do take Baclofen (muscle relaxer) every 6 hr. so that I can keep it in my system and this has seemed to help. I am going to keep the pain patch on constantly, because as someone said, I have to worry about the here and now and now worry about what may come. I had to reschedule my appt. with my internist and now I go on Fri. We have been covered in snow here and on a Level 3 snow emergency so that's why I rescheduled. I need to get a new script for Percocets so that I can throw those into the mix of things when the day is really bad. My big problem with any patch is that I'm allergic to latex and the patches make my skin raw. For those of you who have had a hearing......what kind of questions did they ask you? I do take Cymbalta which is an anit-depressant and helps with the Fibro. My life really sucks without that so I'm very careful to make sure I don't run out of it. We really do have to stick together because unless someone has walked in our shoes they don't really understand even though they mean well and try to. Hope everyone gets a good nights sleep.
Nurse2
Posted 2/17/2010 6:37 AM (GMT 0)
Nurse2
As I remember they asked me what I could and could not do, example can you walk around? how far? How long can you stand in one place? stuff like that, and they also asked me about different jobs I have done and about the training I have had. Like for me I can not stand in one position for any length of time, I need my cain to lean on and to hold me up. When I stand at the sink and do dishes, or anything with my arms out, I get pain and spasms in my back, and I have a hard time using my arms and hands. I told them I could ride my riding lawn mower for short periods of time, but then I would have to stop and go in and rest in the recliner. For me the questions was all about what I could do and couldn't do, and how it affected me. As I mentioned before the judge even asked me to walk around the room! They also asked me about the meds I was on and how often I took them. I know I told them I did not want SSD all I wanted is fixed, so I could work, but they so far could not do that! Try not to worry Nurse2, I do know how hard this is for you, but I really believe that it will all work out for you in the end!
I am curious how does the Baclofen work for your? I take 25mg at 6AM and 2PM and theb 30mg at 10PM it has been a real Godsend for me!and it has also helped with my pain. It took awhile to get the dosage right, but once they got it right, it has really been great at controlling the muscle spasms!

I do hope you can get your pain under control!

J wish you only the best nurse2!

White Beard
Posted 2/17/2010 9:03 AM (GMT 0)
I'm curious about the baclofen also. I've tried flexeril & zanaflex but they don't really seem to do anything but make me sleepy. No real help with the muscle spasms.
Posted 2/17/2010 4:03 PM (GMT 0)
Nurse2 I am so glad that you have decided to go back to the patch for the time being. Can you get in to the dr that rx'd them to you and let him/her know about the allergy problem? There are many different meds that he can try you on to take the place of the patch. I just hated seeing you suffering so much. Dealing with pain is one thing, but letting it get over the top and then trying to get it lowered is nearly impossible. Like I said, I have been told shoulder surgery is one of the very most painful surgeries there is including back surgery. I was told this by a shoulder surgeon.

Please take care of yourself.
Posted 2/24/2010 8:55 AM (GMT 0)

Hi Guys......I've had a bad couple of days so I haven't been able to use the computer. To answer some questions...The Baclofen, if I keep it in my system around the clock, helps reduce the spasms that I have. I didn't use the pain patch for 3 days and I ended up in the floor, crying and vomiting off and on. I had done a little too much on Sun. and I paid for it dearly. I drove for  the third tiime since my shoulder surgery and ended up spending the evening with my head in the toilet! So, I'm not going to try that again any time soon. My body gets into what I call "the charlie-horse mode" and I end up in the floor trying to stretch everything out. It's absolutely miserable. I had to slap the patch on, take extra meds and wait it out until they began to work. I'm not sure if I'm coming down with a virus or what but I'm miserable.(severe headache, more aches than usual and this feeling of fullness in my ears and I have no sinus problems going on at all) My husband checked my ears and they look fine. (he's a physician). I saw my internist today and we are going to get an MRI of my shoulder and set me up with a pain group that is affiliated with my neurosurgeon's group now. They do procedures as necessary and meds. I'm anxious to see what they have to say and also see what the MRI shows. If the RSD is acting up again we need to treat it quickly. I did hear from the social security people and they are going to schedule a hearing. I guess I will receive a copy of all of the data sent in from all of my doctors and from the doc who reviewed my case at the social security dept. If one of my docs turned in a negative report on my end I'm going to make an appt. to see them and tell them how disappointed I am in them since I've been going to all of them for years so they should know that I'm not trying to "get out of working". They all know what shape I'm in. Anyway, my internist is very active in trying to help me with the pain situation so I'm very thankful for that.

Nurse2

Posted 2/24/2010 9:13 AM (GMT 0)
Hi nurse 2,

I am so sorry that they denied you! It just makes me so mad to see those of use with real issues having to jump through so many hoops just to get what we need to survive. I too am in the third stage of this process. First appeal was denied within weeks of applying, second I went through a DOJ I guess that is what they call him. He sat there and asked me hundreds of questions and there was my attorney, a person from the employment side, as well as others with interests in my case I guess.

Anyway check this out. With having to lay down, sit or stand just like you I to was denied. Judge said it was because of my age, that all the medical supports my claim and if they had to give it on just the medical alone I would have easily gotten my checks. Boils my blood that just because I was 44 at the time that they would deny me for such a stupid and down right horrible reason!

But....now we are in the third stage. My attorney says that this stage of the game takes the longest, up to 3 years. And that it is based on not me as a physcial person, but all of me...the injury....the medical...the works. He has like a 95% success rate in this stage so I am hoping to get even some to help around the house with ya know? I hate not being able to work, but I mean I just cannot understand why its so hard to get SSI.

Okay off my little mad rant LOL.

hugsssss

Scarred
Posted 2/24/2010 6:59 PM (GMT 0)
Hi Nurse2,


I am so glad you decided to get back on your medications. I was the one that said to you not to worry about the what if's with the patch because that is just something that may never happen. You deserve not to be in the kind of pain you were in and and yes, you need some quality of life. If it means taking medication to have it, so be it, that's ok. Stay with your medications and stay on top of your pain instead of under neath it like you were.



I am glad to hear about the dr getting you set up with pain mgt as that sure sounds like something you really need. You have so many different health issues that cause pain you need the very best care you can find. Like I told you before in a post, I have been told that shoulder surgery is one of the most painful ones there is to recover from. I do hope the RSD is not trying to rear it ugly head too.



Take good care of yourself and post when you can. Hugs,
Posted 2/24/2010 9:19 PM (GMT 0)
Hi Nurse2,
I too have been through multiple rounds of denial, appeal, denial, appeal and finally after 4 years...approved. (after two different judges!) I felt like I was on a merry-go-round of nonsense. I feel for you Hun ~ I am happy to answer any questions you may have about SSI. I know both of the Judges I dealt with has completely opposite questions......for now, control your pain as best as possible and know you are in our thoughts! I wish you the very best!
Huuugggggsss!
Posted 2/25/2010 6:49 AM (GMT 0)
Nurse sorry about you ssd my doctors all said i could'n work i went to two ssd   they said i was so limited to what i could do that i couldn't work let alone all the meds i was on.I even went infront of the judge and rehab doctor said there wasn't nothing i could do .They still turned me down i applied again the doctor they sent me to this time just padded me on the shoulder and said don't worry you will get it on the first try and i said this is my second try and he wanted to know who the judge was and he said that explains it well come to find out this judge was sent here to cover back log and only approved 2 cases while he was here in 18 months so hang in there you will get it but it does take time my was 4 years and 4 days before i got my back pay which i only got 6 months worth so i appealed that to and won that case so keep fighting you will win hugs to you Deb
Posted 2/25/2010 6:54 AM (GMT 0)
nurse2


Do they know what causes your "Charlie Horses"? Do you get them everywhere? For me the Oxycontin and the Baclofen are the most important of my meds! Eevery eight hours! Even with the Baclofen I sometime get periods that I still have some spasms, they are not near as bad nor as intense, but I do get them everywhere, and as of to-date I have had no firm explanation as to why I get them, as they say it is not all from my bad disks! Anyway I found that I to must keep the Baclofen level up and I do not miss a dose.



As for your SSD, all I can say is I thought I had went through, ( well a very hot place) to get it approved! As I had previously mentioned I had also went through two hearing and seen two different judges. You know they ( my lawyer) told me over and over again not to take the rejections personally, but I am only human and I did take each and everyone of them personally! I have feelings, and I hurt both physically and emotionally, just as I am sure that you do! I think I do know what your feeling nurse2! I know it is not easy for you, but try an hang in there, and know that you are not alone, and we are all here for you.



I do wish you well!



White Beard
Posted 2/25/2010 12:01 PM (GMT 0)
Nurse, I hope your feeling better this morning!!! Have you ever tried any meds for nerve pain? I used to get severe muscle spasms in my neck, base of my skull & shoulders that were very sore even to touch. Nothing helped, after trying neurontin, it got them to a tolerable level. Not sure why but it did but only in the cervical area. Didn't help anything else so some of the problems in my cervical area must be more nerve related. Who knows??

I'll keep my fingers crossed for you on the whole SSDI thing. I'm in the early stages of my fight for it and don't look forward to the struggles ahead. All you can do it keep plowing ahead and follow your doctors instructions. Let us know if you find anything in the doctor records when you receive them. There are alot of us in the middle of filing and maybe you can help us out with any suggestions.
Posted 2/27/2010 5:27 AM (GMT 0)
Hello Everyone.....I'm not a very vain person as a rule. I like people for WHO they are and not WHAT they look like. (Today I'm having a bad fibro day so forgive the spelling or typing errors.)
This morning when I was trying to put on my makeup I caught a glimpse of the woman staring back at me. It really upset me. I look like I have aged 15yrs since this time last year. My weight...oh, the battle with weight... seems to be winning the battle again. I have taken Neurontin for many,many years. Last spring my rheumy increased my dose from 900mgs a day to 2400mgs per day and in 2 weeks time I gained 25lbs!!!! When I stopped that dose of course the weight didn't just fall off like I'd hoped it would. Then there are the occasional steriods whether injected or taken by mouth always pack on a few pounds and they give me such a headache that I eat like a bird while I'm on them. I was shocked at the pain you could clearly see in my eyes!! My skin seems to take on a different texture when I'm having a "flare" and it looked like the roads after a hard winter! My sclera is so pale it is almost white. If I were a car I'd take myself in for 100,000 mile check up and a new paint job, :0} It's bad enough that we feel like total @#*$ most of the time but is it really fair that we have to LOOK LIKE IT? I think I'll just go to the hearing without any makeup and won't do my hair and on that alone they should pass me just so I won't be going out in public and scare the crap out of small children!!! Oh well, I never made any money on my looks anyway but I never actually stopped a train with the way I looked. Anyway, enough of that. I think I will ask the judge if he would hire me knowing that I'm on narcotics and muscle relaxers around the clock ? On this type of med my astigmatism is so bad that I see double most of the time? Not to mention that none of us could pass a urine test! Mercy, mercy, mercy......the lives we do have to lead!
Nurse2
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