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Posted 9/18/2013 6:04 PM (GMT 0)
This morning, received a phone call back from the PA (when I called Friday, explained first, that I was looking for specific guidelines around activities, and second, that I was filing for disability, and these references would help me so that I can maintain and progress).

She called to say, "There are NO restrictions with regards to your back.  The ONLY restrictions are with your hip."

That was the message left.

Uhm, yeah.  So if I try to go back to work, my jobs involved being able to lift and/or transport heavy weights, sometimes from low levels, so a lot of bending,...standing for long periods of time, a lot of walking, stairs...

As I understand it, as my surgeon expressed, with L1 through L5 fused and L5/S1 on the wonky side, I cannot move without restriction (because it's fused,...right?  Uh huh).  Bending, twisting, lifting are impaired as I lose flexibility.  Yep got it.

And with hip problems, where I cannot extend the hip when I walk, my gait is altered so I twist my spine to move the right leg.  Oh, and yes, the foot drop on the left means I trip quite easily.

So now I'm second guessing everything.  "I" feel like I have a good grasp of what is, was, and will happen to my spine.  "I" feel like I have a good grasp of foot drop and the limits it places on me, including the basic ability to balance without toppling over, (which I've done).

So what gives?

With "no restrictions" does that mean I can lift patients, or rack 45lb plates at the gym?  Both which would be required of me.

What should feel like good news, does not feel good to me.

Merrida

Posted 9/18/2013 6:27 PM (GMT 0)
That does seem kind of,not right.I think I'd rely on your own judgement Merrida.You know what's going on with regards to how you actually feel.I know some Doctors like to think they know how we feel,physically,better than we do.But there's no way they could.

Hope every day is better than the last for you,
Rick
Posted 9/18/2013 6:27 PM (GMT 0)
Whenever you do file for Disability your working days are over.Good luck with whatever course of action you take.

Rick

Post Edited (tidalmouse) : 9/18/2013 12:31:17 PM (GMT-6)

Posted 9/18/2013 7:14 PM (GMT 0)
I'm a bit confused on you talking about filing for disability but then talking about going back to work? Are you just talking about short or long term disability through work and not SS disability?
Posted 9/18/2013 7:36 PM (GMT 0)
I've already sent the paperwork to the firm I hired to help me handle this. I have not worked in almost 6 years because of CP and related/causal issues. I have brought no income into the household.

My family (immediate and extended) had been asking me to file for these past few years but my pride was misplaced and I didn't. Somehow, I justified in my mind that living off my spouse's wages alone was better than being labeled disabled, especially when I see so many people leech off the system.

I know people are on it legitimately. My MIL is one. For my family to suggest it came strong because I was raised you work at McD's if you have to but you do NOT apply for assistance. In that, I disrespected my spouse, my family, my values were misaligned.

The paperwork is already in the system. It officially started in May of this year (original filing date). I procrastinated repeatedly.

When I got my first hip replacement and felt better, I thought, "hey, wait, I can probably go back to work now!" Then the back really caused a storm. Then I started to feel better, XRays were neg, then my right hip gets replaced, and there were complications from that which I still haven't recovered from.

With nerve damage that may or may not be permanent, either way, I'm a fall risk. Most of the symptoms from my back (pain related) are almost entirely gone. The pain I have is now of a different sort. And yes, the hip seemed to stall me out.

I have no preconceived idea of how disability even works, (other than I get told I'll probably get rejected, at least a few times, and have to appeal, expect a difficult and long road)....then I remember the people from two areas where we used to live in Boston, where whole families were sucking off the system, and it's built into me, that it's fixed or rigged,....or that I'll have a label.

With each surgery I thought, "This will be it!" I didn't know each 6 months I'd be having another surgery to fix the next thing breaking down. So I always justified it in my mind that "this time" I'll be all better.

But I did file, that part is done, and the legal aid handling my case spoke with me yesterday (44 minutes) just to review my providers and medications. I don't know how I would know if this is permanent or temporary, I'm not a doctor.

This is why I'm confused because I know what limitations I perceive,....such as the new environment of our new home as I adjust to a large house with many steps and walking my dog....I used to have to hire a neighbor's teenage daughter to walk him because I was in too much pain,....I couldn't enjoy our home, my family, our dog!

I admit I am ignorant of how this works, the entire process. I admit that I do have preconceived notions and judgments about disability. I've worked in different settings where I saw from the other side of the desk, how people coming in with disabilities would certainly appear able-bodied and fit, (but I'm not a doctor, who am I to know? It's that same "perception" I "worry" I will present). I admit that I'm afraid either way, getting approved or denied, both scare me.

Would I like to return to work? Well of course. Will I be able to? How do I know? My body keeps changing on me and the wind blows me in different directions so I cannot get a true reading.

That's why I feel frustrated, a bit angry, stupid, ignorant, confused, disappointed....



Merrida
Posted 9/18/2013 9:50 PM (GMT 0)
Hi Merrida First I want to say that you're not stupid. Maybe ignorant to what it is about the disability, but never stupid. ((((((hugs)))))) I can see why you would be frustrated. I'm sure most if not all of us have felt that way at one time or another.

Did you file for disability through Social Security, since you haven't worked for quite a while? It's really good that you got help, because there have been so many people that have fought for years just to get it, when they clearly couldn't work. I've been on SSI since 1999. I was denied one time, and I hired a lawyer, and I got it before I could turn around. I think it's much harder to get SSD or SSI these days. The only reason I didn't get the SSD, is because I hadn't worked enough to add up enough credits.

I wish you so much luck with getting the disability. I hope you're having a low pain day.

love and hugs
Loretta
Posted 9/18/2013 10:28 PM (GMT 0)
Thank you Loretta,

I filed once, initially, almost 3 years ago, and did it by myself, with my therapist's encouragement. Primary Dx was "depression."

And after being in CP and not working, yes, I was depressed, angry turned inwards. I heard from SS for a visit with a psychologist, but I kept postponing it out of embarrassment. I'd get a denial, reschedule, and postpone again.

Then I had my first surgery, and as weird as this sounds, from that moment forward, I have not been depressed. My marriage was crumbling, my family was falling apart, so was my body. A lot was on the line.

Something changed. I thought I was "fixed" physically and mentally.

My new therapist would not support me filing for disability. Plus, I am genuinely not depressed. I've been back to my regular happy self, with moody days, and my life turned around.

But I still didn't follow up on SS.

Then in May of this year, hired a firm, they work on a contingency basis, all they do is disability. I knew I'd drop the ball if I tried to do this by myself,...again. At least this time around I have a legal team, and they DO stay in touch (I need those nudges).

Thank you for the feed back. I'm in a right state, mentally, because I feel so conflicted about this filing. Once those papers hit the mailbox, anxiety kicked in.


Merrida
Posted 9/19/2013 5:48 PM (GMT 0)
Hey Merrida,

I wanted to touch base with you because I saw you responded a few weeks ago. I got hit with pleuricy which sent me in an ambulance to the hospital where they performed all KINDS of tests and sent me home with an antibiotic. After two days on the antibiotic, I developed an allergic reaction (which I didn't know I was having). I couldn't breathe very well (wheezing....) and I had a body rash which I didn't know was there either. Funny. I had no idea I was allergic to anything...I'm 48 and in excellent health. So back to Urgent Care I went where I spent hours on fluids.

The following week, I developed laryngitis. Oh....it's been fun ever since I had to quit my job because of my new back not liking the type of work I used to do. Now that the bending, lifting and twisting is over, my new back is happy. Now it's on to finding a new job. I've never quit a job before finding a new one, so I'm on a new playing field.

I am so sorry to read about this issues you're having still with your back! Are these medical professionals nuts, or what? They Dx you a malady, they correct it (supposedly), but then tell you all is well, return to the usual and customary job requirements with your new back and expect you to be able to do it? Your therapist and mine are alike in that they believe depression is a real result of CP. If you are lucky enough to already be predisposed to or suffer from depression/anxiety (me!), then going through back surgery would seem like enough to end your own days. I don't know about you, but that though crossed my mind several times.

I was going to suggest you hire a SSD attorney, but I see you have already. One of the forum moderators offered great advice to me about doing the same. It's easy to say, "Don't feel anxiety for filing for SS!" You have a real condition which merits a filing and the attorneys battling for you. Anxiety is normal and know that you have a good reason to file. Relax and let the attorneys do the work. You just heal.

My step-sister fought hard for 3 years for her social security due to scoliosis, pain because of it and fibromyalgia. She is also hit with borderline personality disorder (poor thing) and cannot hold a job at all. If there ever was a clearer case for awarding social security benefits, I don't know what is with her and it took 3 long years without an attorney to secure this. I hope your success is shorter in duration!

Because my back is happy now that I am not performing the repetitive motions, I can only conclude the repetitive motions were the issue. I'll have to find a job that pays less, I'm sure, but it will be one that won't cause me more pain.

I also learned that I am not a good Rx drug user. Well, I take that back. I was a great user of Rx meds and used them way too well when I was on them. They caused me to sink into a deeper depression. A really, really dark place I never knew existed for me. It scared me that I could sink so low. So, knowing this I don't want to even consider having my screws removed at a later time. I'll cope somehow with any pain using Tylenol PM or Tramadol. I don't ever want to feel that depressed ever again. The SCS is not an option for me because I know I could realistically fail the psych evaluation that must be given to make sure I can handle administering my own treatment. If I cannot take Rx meds correctly, I don't even want to go there with a surgical implant.

Hang in there, and I'll check back to see how you are doing with your progress. Keep up with your positive state of mind! Do things that make you feel good if it's just going to get your hair shampooed or a pedicure to watching a funny movie with a bowl of popcorn. Whatever makes you feel good about you is what you should do!

Lori
Posted 9/21/2013 1:30 AM (GMT 0)
Merrida,

Not having any restrictions will definitely lead to a denial. SSA goes by Facts that are documented in your medical records. Diagnostic test results, physical exams, treatments tried and outcomes, restrictions and how they are connected with your disabilities. A diagnosis alone doesn't equal a disability. And it's not just that you can't so you previous job or the one you're trained for. It's that you can't do any job in the national economy. SSA might say that you can't return to your previous job, but you could be a receptionist or take tickets at a movie theater, etc.
Posted 9/21/2013 1:58 AM (GMT 0)
Merrida I got turned down when I 1st filed for SSDI,which I think always happens except in a few cases.I got a lawyer to handle it and Appealed.I had to see a Psychiatrist and a Physician for a Physical that Social Security sent me to.The Doctor that was working for them put in his report that basically ever joint in my body was messed up.

My Hearing was about 1 year after my Appeal.It was Skyped with a Federal Judge in Birmingham,an hour from where I live,When the Judge read off the laundry list of things wrong with me and then asked me a few questions it wasn't but a few minutes before he awarded me SSDI.

It took me several years of struggling at jobs to realize that I couldn't work anymore.It was pretty emotional for me when the Judge read the Doctor's report and it sunk in exactly how screwed up my body was.

Good luck with whatever your course of action is.
Rick
Posted 9/21/2013 11:49 PM (GMT 0)
Bugger.

This blows.

At least I do have a legal team.

I spoke to my PT about it, and no one wants to take a stance. It's funny because before my surgery when I was massively depressed, my then-therapist pushed for me to get it on psych reasons, and I flat out refused.

Now, I'm physically breaking down, but my mind's in a better place.

I can only hope...and do what they ask. Functional testing.... I know of more than a few people who are on disability for psych reasons, and it seems they are rarely if ever questioned. While I'm certain many are legit, I also wonder if some of it has to do with being "proper."

I think I'm going to call my surgeon back next week. He's been my biggest supporter. I never did care much for talking "through" a third person.


Merrida
Posted 9/22/2013 3:10 AM (GMT 0)
Just because you file for disability doesnt mean you can never work again either. In fact, you can still work part time (up to a certain income amount) and still receive disability.

Also, if your body ever recovers to the point where you feel working might be a possibility...you can TRY it...and if you can't handle it...you can resume collecting disability...without having to refile.

So look at this as temporary assistance if it makes you feel better. You never know what the future holds!
Posted 9/22/2013 8:45 AM (GMT 0)
Thank you Lexi.

That's how I feel. Of course I'd like to return to work. That was part of the reason I kept putting off filing, thinking each subsequent surgery was going to "fix" me. (Silly goose, me).

What happens if the docs "they" send you to catch me on a "good" day? We all have 'em. That's what I'm worried about as well, if that makes sense. Heck, I never used to have any good days, so that I'm getting them now is great!

But at least my diagnostics show quite a deal!


Merrida
Posted 9/22/2013 1:02 PM (GMT 0)
Merrida, the diagnostics are very important, try to keep that in mind.
Posted 9/22/2013 9:55 PM (GMT 0)
They ask a bunch of questions, and then evaluate your movement. capabilities, etc. So it's a combination type thing.

When my mom got evaluated (she has RA) the doc examined her...(took note of the nodules, the degree of deformity in her hands, feet, etc) and also asked her to demonstrate certain things...picking up a coin off a flat surface, buttoning/zipping up a jacket...opening a jar...basic day to day necessities.

He also asked her a bunch of questions regarding the ways RA has affected her life, what she has trouble with, what her pain is like...everything.

So even if you happen to have a *good* day when you go...they're not just looking at the ONE day. They're looking at the overall picture.

When you answer the questions...don't answer based on how you feel on a good day. Answer by how you feel on your worst day.

You know that saying that says "the chain is only as strong as its weakest link?" Look at it from that perspective. Because in terms of the ability to work, I personally look at it like I'm only as good to a boss as well as I can perform on my worst day.
Posted 9/26/2013 7:58 PM (GMT 0)
Lexi,

That is exactly what I've been thinking about! In fact, that is exactly why I felt my heart flutter quite a bit when my surgeon said, "no limitations."

I'm thinking: Among other things, I trip, and am a fall-risk. That's a dangerous consideration. Don't know of too many employers eager to hire someone who is frequently at risk for falling, and usually without notice or provocation.

It just happens randomly. There I'll be, walking along fine, when *trip!* Or sometimes it's getting up, out of a chair. Steps present another challenge all together. All this WHILE I am wearing my brace, too.

While many things I know will improve, such as strength and endurance, through PT and exercise, at this point, I'm still struggling with things like,....getting pots and pans out of the cabinet, things like sweeping or mopping the floor are particularly painful.

It's only been 2 weeks that I've been able to shower without the use of a shower chair. My ability to stand is very limited (so the legs get shaved,....uhm,...well,...I'm often Mrs. Yeti)...the required flexibility and endurance to bend over to shave is very limited. I have to set my priorities.

So bending down to put things in or take them out of low places, anything involving twisting, walking over carpets from hard floors, and of course I lose my balance very easily. God forbid someone bumps into me -- it's quite possible I'll take a header.

What bugs me is it can be over something so little....all it takes is one pebble on an otherwise smooth sidewalk or hallway, and my foot won't clear it.

I finally got to where I could go from twice a week up to three times a week with PT to be as aggressive as possible to get conditioned...

No pun intended here, but I do feel a bit like the carpet's been pulled from under me.

Thank you everyone for all your input and help. I can't begin to tell you how much I appreciate it!


Merrida
Posted 9/27/2013 3:35 AM (GMT 0)
Merrida, something that is beneficial on a SSD claim is having a Functional Capacity Evaluation (FCE) done by a physical therapist. Your primary care dr can have this done. This will tell the story of what you can or cannot as far as the condition of your body.

Take care...Susie
Posted 9/27/2013 5:27 AM (GMT 0)
Merrida, the info below might help explain some of the process.

Disability Evaluation Under Social Security-Evidentiary Requirements-
http://www.ssa.gov/disability/professionals/bluebook/evidentiary.htm
Posted 9/27/2013 10:44 AM (GMT 0)
I had a FCE done prior to my ALJ hearing Susie. I noticed in the courtroom, well really it was a small conference room, lol, that everyone in there had a copy of the test results in front of them and that the Employment Specialist and there's always one on the team, kept looking back and forth at it and she actually was the only one I saw reading its entirety!

When the Judge asked her if there was potential for any "gainful " employment? She shook her head No and that was the end of my 5 minute hearing that had taken me a year and a half to get to.

The Judge said congratulations such as it is and my Attorney walked away around $7000 richer!!! Lol

That 8 page report in my book sealed the deal. It was brutal but worth it.

I would certainly ask if you could obtain one.
Posted 9/27/2013 12:53 PM (GMT 0)
Yeah, my NH PT's mentioned the FCE as well. I asked them what their opinions were and all he told me was, "All I can do is send in my report."

I'm still pretty fresh as a new patient up there, we're not too well established yet. I'm going today, and I'm going to bring it up again to him.


Merrida
Posted 9/27/2013 5:06 PM (GMT 0)
Merrida,

I also had a Residual Functional Capacity Questionaire filled out, but this was by my PM Doctor. I cannot remember exactly how many pages it was, but it was several, I found it on the internet just by searching and printed it out for him. He told me that he was glad to help out, he went above and beyond to help me with this as he knew it was for Disability.

He evaluated me, and he took several months to do it as that was what he felt comfortable with. He also made a lot of comments on it and included testing and results that were not absolutely necessary. He included 20 or 24 pages of my history with him as well as the testing he had requested me to do and the results of all of that testing.

When I finally got my ALJ hearing, it was a face to face affair. I did have a lawyer, but he was actually through legal-aide from the state of Ohio, so he did not get paid a dime. During my hearing the ALJ did ask me questions, the only papers that he referred to during my hearing was the packet of information my lawyer had submitted to him from my pain doctor. After a 20 minute or so hearing, I was told that I was approved retroactive to the date that they had disallowed me.

That was back to the fall of 2007 and I got the approval in the spring of 2011. So about 3 1/2 years was what it took me to get to the ALJ. I had been previously approved for Disability in July of 2004 due to a diagnosis of Acute Myelogenous Leukemia as I had about a 30% chance of survival - it was considered a terminal illness at the time.

I had filed with SSDI to continue my payments through them all while I fought to continue my approval process. If I had been disallowed my SSDI at the ALJ hearing I would have owed the government in excess of $90,000.00. That was a huge amount, but deep in my heart I knew that I was completely disabled and that there was and is no way for me to work.

I wish you good luck with this and if you want a copy of the Residual Functional Capacity form that I used, please email me (it is in my profile), but I will have to get your mailing address because this form is no longer available on the internet. The link I used to have to it is now dead.

Hope this helps you!
Trudy
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