I haven't been here in a while but I am to the point of being as low as I think I can get. That being said I am sure something else will pop up now.
I applied for disability in Oct 2013 - denied in Dec 2013, Obtained an attorney and re applied in Jan '14 - denial in Feb '14. Appealed for hearing March '14. So now I am waiting for a hearing date which could take 12 to 18 months just to get a date scheduled???? How can it be this so shoddily handled. Are there that many people applying? Do we need more workers in this area and judges to help with the case load? Then the judges get called before congress for having approval rates of 95%. That the disability area only has enough money to last until 2016. Well guess what congress you took that money for other things with an IOU - so put it back like you were suppose to. We can't put our bodies on hold - as much as we would like too!!!
I have failed 3 biologics - don't want remicaid. My pain is increasing, my joints are getting stiffer. I have a 3 level fusion that has start wearing out the next two disc above. I have bone spurs c3 to c6 and c7 has disc slipping forward. I need fusion surgery on my neck - but oh that is right I don't have insurance. Found the bone spurs when we thought simponi had started MS. No lesions but bone spurs the ortho here wanted to do PT for. So now I am driving 1 1/2 hrs to see the ortho who did my fusion 12 years ago.
I have applied for medicaid - I'm not disabled enough. I have ability forms filled out by the ortho who say no squating, bending, lifting or stooping. I can balance occasionally. That would be before my best move which is falling. I had a cortisone shot under fluro to help with the pain in my lower back. I can't walk more than 200 feet, can't turn my neck, can't sleep, can't get comfortable, my feet hurt constantly. Can only stand for 2 hr out of 8. Must sit for no more than 30 and move around 20.
I am so tired of all the red tape, playing around with peoples lives. I am almost broke. I have to say to my kids (who are old enough) time to go and get out into the world because I need to sell the house. Or you can help pay the bills. It makes me sick - I am suppose to help them and be there for them. I feel like an utter failure at this time. I can't stop worrying with are making my panic attacks go off the charts. I have tried to keep the MD's paid because I need to be able to see them but I can't do it any more I need to pay bills. Why do they put us in such desperate situations.
I'm tired, discouraged and ready to throw the towel in. I guess a doctor's office won't put me in my grave any faster than the stress of applying for disability. That is what they want. I know I can't do 12 hour shifts at the hospital but maybe 8 at an md's. Where's the easy button????? If anyone knows can you send it my way?
Thanks for listening what I can't say to my family.
Hi,fairemaid,I’m so sorry you are struggling so. I’m new to PsA so can’t help much I’m afraid,but wanted to encourage you to keep fighting. The disability process is designed to make you give up,and go away. Unfortunately you can’t give up so you have to keep fighting. You are not a failure!! You are sick,and doing the best you can. Have you checked with United Way? Sometimes they can help with necessities during this crisis. I’m sure the others will be along soon with more practical advice. Just didn’t want you to feel alone. Blessings MrsD
So sorry for you! I hate PsA even more when I hear how it can ruin lives. A few months ago I was oblivious to the severity of the disease. I hope things get better for you-hang in there, fairemaid!!! :-(
Wow - you've been through, and are going through, a lot both with your PsA and with trying to get the financial support you need. I have no practical advice for you, not having been through the system yet, but I wish you well.
I'm wondering why you don't want to go on Remicade - if you don't mind me asking. I was wary at first, but it's literally been the difference between depending on a wheelchair to get around and spending too much time in bed in pain and being able to go hiking with my family and, for a time, putting my wheelchair, crutches, and canes away! (I said for a time because I'm dealing with other issues right now. Ugh!)
Hi,fairemaid, hope this day finds you feeling a bit better. Sounds like you have taken some steps to make the financial situation better, esp. If your sons are able to help. Hope the United way can help. It’s bee a long time since I had any dealings with them, back when I was a hospice nurse and they helped out some patients.
Oh, I had wanted a straw bale or cob house forever!! Hope you have some family to help with that project. Glad there is family land available. We are hoping to move out in the country ourselves, more land,peace and quiet,and one story houses.
For the very “special” few, treatment can flat out SUCK. However, I would encourage you to keep an open mind because it seems that there are new things in the pipeline all the time. You already know that you will continue to feel like crud until you find a med that will help way-lay the course of the disease. A reaction to Enbrel does not necessarily mean reactions to the other bios is a certainty. If it can give you your life back, might it be worth the risk? I have tried everything they throw my way. Some things have gone better than others, but I finally found a “winner” with Remicade. Please keep some hope there with the meds.
The disability process is a nightmare, as you are discovering. Your best bet is to find part time work that you can do. You are likely to make more money doing that than you would ever get from disability. Then you could get an ACA plan for insurance. Much easier to get than Medicare. Some DR offices will hire a part time nurse to work with personnel type stuff, and ordering supplies, scheduling, etc… Another option is to do preop screening at outpatient surgery centers, or get a loan and get a legal RN training and act as an expert witness (rarely have to go to court), there are more things that I am forgetting. I left my 12 hour days in the dust 2 years ago. BEST. DECISION. EVER. I work a lot, but I work from home, so I am able to keep up with the hours.
Finally, get into pain management. Again, this was an excellent decision on my part. I am able to function to my fullest.
Grumpy is giving you good advice. frankly its pretty hard to not want to debate you.
So let me tell you where your problems are at as I see it. First of all get off the internet especially the "wing" (either left or right) websites. They will poison your mind. In regards to what is happening, your numbers couldn't be more wrong.Nationally at application the allowance rate was 36% and the denial rate was 64%. At reconsideration 14% of the cases won and 86% lost. At the hearing level the winning percentage was 63% with a 16% dismissal rate and 21% denial rate. At the appeals Council the allowance rate was 2%, another 2% were dismissed, 22% were remanded for a new hearing and 73% lost. At the federal court level there was a 5% allowance rate, 8% were dismissed, 47% were remanded for a new hearing and 40% were denied. Those numbers are a bit misleading as a fair number of applications should never have been made to begin with.
Many others are are poorly prepared and poorly documented and worse represented by "attorneys" playing a numbers game, Their representation is dubious at best. all they need to do is have a secretary fill out forms and submit. 20 minutes work by 10.00/hr assistant can yield a 6000.00 pay day 1 out of 10 times. The worse job they do the larger the residual and bigger payday (recently there has been a cap put on these guys)
You need a better work test. Your limitations are less than mine and I work 14 - 16 hour days. I'm not saying you can, but an administrative court will. My sister pays RNs more for a few hours a week preparing patient care plans for the long term care facilities she is Care coordinator for than you will ever get on disability. She always has openings. As she says this is where old RNs come to mold. (She incidentally is 74 has had three spinal surgeries, has very severe PsA and frequently gets confused as a resident in one of her facilities as she todders down the hall on her walker.)
You need better documentation on treatment. You have medical records that are showing you are refusing common treatment. Remicade must be reconstituted before use because it DOES NOT contain antibacterial preservatives. The courts know this If there is something in there you are allergic to, document it IN DETAIL. otherwise you sound like a nut. Even a hint of being a non compliant patient will disqualify you.
Document your other reactions in detail. Site reactions aren't enough. You are not in pain management from what you posted get started. You have 14 months to do it. Plenty of time to get Voc rehab behind you as well as document workforce reintegration attempts. Incidentally 14 months is pretty darn fast. My daughter is a judge, she has a calendar six years out for civil matters..
You need some better advice than your attorney is giving you. First of all you don't get medicare with SSDI for at least 18 mos after commencement of benefits (not application date). You can get any of the meds for PsA without insurance and generally easier and cheaper. In North Carolina if you are not working through http://www.ncdhhs.gov/dvrs/ specifically disability determination services, have completed every step prior to final determination and have their blessing nothing will happen... EVER. I'm reasonably certain your attorney didn't tell you that. They will help you through every part including medicaid and even assistance and some trial job placement. Yes you can go to school and even work through the process and beyond DVRS will explain how. Your doctor is not qualified to do any disability determination. He is qualified to help you put together a comprhensive treatment plan. He needs do that or be replaced.
It’s a catch 22. If you could patch yourself together in order to work, it really is the best bet. Like I said, even part time, you’ll be much better off. Have you tried injecting MTX instead of oral? Start there and see what happens? I understand pain every day. I have been there every day for two years.( oops! It’s three now. My how time flies!) Mine is better than it once was, but it’s still there every day. No to have a contest, I really don’t want that, I just want tell a little bit. I do still have a hard time getting going. I get up an hour before I need to get ready, if it’s a leave the house day, to take my pills. Then I sit around waiting for them to kick in. Once they are working, I get ready for work. If it’s a stay home day, I can just get up my hour early,take my meds and crawl down to the office in my pjs. There are still days that I just know I can’t make it through the day. But, I feel like I am doing great! I am working, and doing a few things extra, and that is quite good enough.
It’s all about the right meds. Two months ago, I was so close to just calling it quits. I couldn’t do it anymore. But I got the right combo going and now I can at least cope with the pain I have.
I haven’t heard many bad things about Remicade. I’ve been on this board for two years as well, I guess it’s almost three now, and can only remember one out of all of us that take it. Hers was a simple allergic reaction. I know it’s impossible for you now (lottery?) but I have seen good things. Some better than others, but not many really negative.
I'm not near as harsh as that administrative judge will be,a dn I am one thing he isn't - Able to care about how all this works
We have three different stories about treatment options. You may not recognize it, but the hearing officer will. First you told us you couldn't/wouldn't use it because of preservatives which you are are allergic to, then because of horror stories, then because of availability.
Before you go before that hearing officer, you better be able to separate excuses from reasons. That will take a lot of work, and you contingent lawyer won't do it. The state service or a independent navigator (which they will help you find) can help.
Also don't ever say "And it isn't about the money. It is about quality vs quantity". again to anyone. Its a lie.
If it isn't about the money there is no reason to go through all of this. That administrative judge knows that. Disability is all about "not being able to" - period, not being easier. They don't care about your quality. They don't care how long it takes to get moving (like Grumpy I am up at 5:30 to be to work by 8:30 and this ex combat medic Army Ranger is in tears most morning by the time I get everything unfolded..) they don't even care if you are in pain. That isn't what disability is about.
I have no clue as to whether you deserve it or not, so don't think for an instant I am judging, I'm not. What I do know is that unless you have taken every option (including many you don't want to) to help yourself and can document the failure. can explain it consistently in concrete terms with out using the "feelings" word. You need to be able to document everything especially why/how you left your last job and your attempts at a different one. If they get even a glimmer that one day you said oh hell, quit, went home and applied for disability while sitting at home for however many months. Any of that you will be denied. If you say one political thing, you will be denied.
