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Advanced Prostate Cancer
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Social Security

As most of us are of the same age group, I am hoping someone had already have the trials and tribulations of dealing with the Social Security Admin.

My History:

* I lost my job in June 18, due to incompintence caused by ADT SE’s (brain fog, severe decline in executive function / cognitive issues. This is in addition to the more typical ADT andropause SE’s.

*. My Oncologist sponsored my claim for RITDI based upon my word when describing my symptoms. This was axcepted by the State and ran untill funds were exhausted on Jan 5, 2019. This was roughly 50% my regular take home pay (with no benifits, I had to pay for those out of pocket)!

*. While still on ADT (Eligard) I Clearly was still unable to work thus not eligible for unemployment insurance. I opted for early retirement in stead of starvation. At now 63yo, I was elegable for SS at a reduced rate. I am in the 66.75yo group. That is roughly 25% of my regular take homep pay ( benifits out of pocket again, too young for Medicare)

*. Now there is a provision where if retirement is the effect of an injury or illness, you can apply for a review. I have applied (jan 2019) and a mountain of paperwork filed in Feb 2019. If approved, this would eliminate the reduced rate penility and consider you to be eligible for your full retirement benifit due at legal age!! I have been told to expect to be rejected and advised to appeal immediately. This will raies my pay to @ 35% regular.......!

My Issue;

Now, here’s the deal!!! The expected 6mo process is underway and now I received a letter demanding that I see their Clinical Psychologist. No instructions other than show up!! I don’t mind telling you that this is really got me woried sick. Set aside my own opinions about shrinks, this has substancial finnancial implications for me and my family.

Part of my decline is that I don’t go out much because I hate talking to people, especially strangers!!! I am unable to carry out a spontaneous conversation and it is quite embarrassing!!! Just draw a blank, standing there like a moron with not a word to say!! Praying that the fucking crying thing doesn’t kick in!!!!

I understand that about 95% of you have no idea about the SE’s beyond hot flashes and no labido. A few of us are blessed with very debilitating SE’s that are far far beyond that!! Many Dr’s don’t get it either, yet now I need to prove it!!!!!

This is not a pity parade. I know where to find sympathy, in the dictionary........

Any ideas on what they will want to hear? What I should bring as proof? Is it time Lawyer up (thats why I put $%’s above so you understand that money is a factor)? Any suggestions at all even from a Psychologist.

Jim C

Ps: I am not seaking Ssd because of having PCa, but the side effects from the treatment. Huge difference!,, they have criteria for actual cancers!!!

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Jimboy, I cannot speak to your experience but have some insights. As it turns out, I do SSDI exams for a law firm that specializes in social security applications. The typical story is that most people get rejected the first two times, get a lawyer and then get approved. The key is in the information, particularly the medical letter(s). The definition within the Federal Law is tight so if the doctor does not use the right buzzwords, it allows the reviewer to reject the claim. It has been no secret that since the administration of "W" the SSA has been strongly urged to reject claims. [https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm] has the specific paragraphs that allow approval. Doctors medical notes and letters have to match up with those paragraphs or the claim is rejected. The problem is that (1) most physicians have never seen the guidelines and (2) the symptoms that must be mentioned are very often NOT MENTIONED by the doctors. This may be out of ignorance, but a darker and more cynical view is that the doctors do not want to be reminded of the side effects of their treatment. So be pro-active, educate your provider about the necessary buzz words s/he must use to support your claim. There you just got a $300 consultation for free!

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Great information!

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The interview with the Psychologist is a normal part of the process, in my case for disability as a result of the PCa. It was standard stuff. Questions like what's the date and year, who is the president, draw a clock face, tell me how this affects your daily activities . You should be able to google it and find lots of information. The best advice I can give is, be truthful in your answers, don't try and "game the system".

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Happy

Not intrested in playing games!!! I shoot straight and want nothing for nothing!!! Thanks for you input but I think I need more help than google!!! I used to be a very smart man. Nowadays, not so much!!!!

Jc

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I applied and received Disability SSI almost immediately. If you are stage IV cancer, which I am, the system is setup to grant it. They contacted my doctor to confirm my diagnosis. After all was approved, they back payed me all the money after the six months after I had stopped working.

Hope this helps and good luck

Dennis

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Thanks Dennis

Like I said though, I’m not claiming because of the cancer. I Don’t even know I have that (except for my treatments)!!!

Jc

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Well...you kinda are claiming it because of cancer- the SE’s of the treatment. If stage 4 with metastasis gets you streamlined and you don’t have to do all of the steps (it did for us) then there is no shame in using that to your advantage. My goodness- cancer sucks- getting your benefits from a system that you have paid into should not be causing you stress. :)

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So if diagnosed with PCa stage 4, SSDI will automatically grant disability? I thought if stage 4 patients have a good response with ADT, then SSDI will deny.

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Stage 4 metastatic prostate cancer is under the list for compassionate allowance. My husband’s went through within weeks.

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Hi,

From the SSDI website regarding Prostate Cancer:

"Listing-level criteria requires prostate cancer to be either: metastatic (Stage IV) to lung, liver, or other internal visceral organ (excluding bone metastases); or progressive or recurrent despite initial hormonal therapy. Prostate Cancer with visceral metastases meets the criteria in listing 13.24 B."

I'm responding to ADT at the moment, no metastasis to organs - PSA 0.2...

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Keep going low brother...

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Yes, I start Limbo practice next week...

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Listen to “sitting in limbo “ by Jimmy Cliff..

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The first Youtube comment:

"I listened to this song constantly when I was getting chemotherapy "

:0

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Hohoho..

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Ok so that’s prob why. Alone with bone and lymph nodes he has bone marrow metastasis which for staging and other purposes seems to fit under “visceral”.

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Looks like it, NIH definition of Visceral (https://www.cancer.gov/publications/dictionaries/cancer-terms/def/visceral):

"Having to do with the viscera, which are the soft internal organs of the body, including the lungs, the heart, and the organs of the digestive, excretory, reproductive, and circulatory systems.

The question is if "bone marrow" falls into organ category. Not clear, but at least they call "bone marrow" transplant as an "organ" transplant...

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I’m not metasatic!! Unless things have changed!!! Pretty sure I’m stg4 but can’t find anything that says that!!!! Found a paper saying 3/12 4+3=7@33% and 9/12 4+4=8@76%. Being dumb as a stump doesn’t help with this type of question!!! I will assume my Dr’s will provide that information to SsA.

Jc

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Don’t assume . Make sure it gets done. Ssdi offered money for my records and no one at banner Corp. would return them . Lucky for me I got my go between lady that’s handled me and my test drug to get all of my records and faxed them directly . A month later I was reinstated.. if not for this lady Lisa ,I don’t know what would have happened.

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I got disability for a separate matter but had to wait two years for Medicare as I was not 65. Is it different with a compassionate allowance determination. Curious as my husband is stage four and may eventually have to go this route as he’s only 59.

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We got through almost immediately with the compassionate allowance, my husband was 50.

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After two years from the date your disability started. Then Medicare!!

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There are attorneys that specialise in this. I would suggest getting one if possible. They only get paid out of whatever money you get from the SSA and the amount is capped.

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Yup, kind of knew the answer when I asked the question!!

Looking into it now,

Thanks

Jc

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So....Just found a site “disabilities.benefits.help.org!! Sent them my info and got a contact in two seconds!! They’ll call me!!!

Why do I feel like I’m paddling in my canoe down a stream and I hear banjos in the distance!!!!

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Got to paddle faster when you hear those banjos!

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Hahaha

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Hahaha, whatever you do , don’t squeal like a pig. All fun aside . Get what you need and deserve .. you’ve paid into this system .. They need to help .. good luck ..

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My MO would not support a ssdi claim said I was responding too well an the SEs were not at a level to justify it. So at 64 I filed for social security and this coming January I will be on Medicare.

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It was not up to your MO. Apply. Provide all records and comply with consultive exams ordered and you could be pleasantly surprised

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My full retirement age is 66 and I filed at 64 so the difference was not significant. Keep in mind I was working and was able to work. I just decided to retire.

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My diference is @ $500. Mo!!! I prefer to be working and pray to return!! Murphey’s law stickes it to me every time!!!

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Yes you are 3 years from full retirement age I was 2 that’s the difference. That’s why I held out until 64. I was going to retire at 63 1/2 but my diagnosis got in the way. So I worked until the end of the year and prepaid my health insurance for my wife and myself for 2019.

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I responded well to the treatments I was on at the time. But with stage IV cancer that only lasts so long.

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Never as long as you want.

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I don't know the American system but it seems to me that you shouldn't be afraid of blanking out or even crying during the interview. It's a good thing for the psychologist to see the difficulties you are having.

I applied for and now receive a Canada Pension Plan disability pension. It was a two page application. The doctor had to complete a form verifying that I had metastatic cancer and the side effects meant I could not return to my work. It was approved in three weeks and my first cheque covered six months before my approval while I was doing chemo. It's too bad your system makes you jump through so many hoops.

Wishing you good luck with everything.

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All valid points!!!! No chemo and no metastatic cancer! Mine is all chemical reaction to Eligard (I guess????). Got a lot to sort out!!

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Many of us on this site talk about SE's other than hot flushes and lost libido. Bone thinning, muscle loss, brain fog and weight gain are topics often mentioned. Not talked about very much is crying. I received a call from the hospital one hour before my scheduled Axumin PET/CT scan canceling it and will not be rescheduled until problem with Axumin is corrected. I couldn't even hang up the phone. I started bawling like a baby for ten minutes. It took me several hours to compose myself. I have been on the edge of crying for a couple of years. BTW I got the scan three weeks later.

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To those that it does not happen to.....they’ll never know!!! Why / when it starts and if it stops!!!!!! F*&$ed up!!! The most embarasing moments in my life were becaues of this in front of family and friends!!!! I avoid people in general for fear of reoccurrence!!!!!

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Diagnosed stage pca @ 57. Applied to ss for disability and recieved within 2 weeks. After 5 month waiting period (from time of diagnosis/last day worked) started receiving monthly deposits from ss. After 2 years of recieving first check was automaticly placed on medicare at age of 59.

Now what I recieve is indeed only about

25% of what I was earning but it is equal to my full ss retirement at age 65 plus about $300 for the stage 4 disability.

Having the midicare now after 2 years has made a huge difference in my choices for treatment at a very fair monthly premium. I can go anywhere that accepts medicare in the US.

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I would suggest you go to your local SS office for a face to face meeting. After receiving conflicting information on several phone calls to SS I made an appointment for a face to face meeting. The person at the SS office was very, very helpful and wanted to help me get SSDI. Much different experience from the phone calls. At any rate, I received my SSDI disability a couple of months later along with "back pay". Once again go in person, they really want to help.

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notice to Jimhoy:

THIS IS A REPRINT FROM A MEMBER "Litlerny" 10 MONTHS AGO.

YOU MAY WANT TO CONTACT HIM SINCE HE'S AN SS EXPERT. <===<<<

My wife and I both worked for SSA for 30+ years.

How old are you now? 63 1/2? For most of us, full SSA retirement age is not until age 66, which opens up the strong possibility that you could be entitled to a higher benefit under SSA Disability than you currently receive under SSA Retirement.

On what date were you diagnosed Stage 4? Is your Stage 4 diagnosis date the same as the date you were diagnosed with PCa (at any stage)?

Without knowing more details of your situation, and you are now 63 1/2 , we think you should definitely file for SSA disability. You have nothing to lose, and potentially a lot to gain by doing so.

Again, It is highly likely that you would be due a higher monthly benefit under SSA Disability v.s. SSA Retirement, even if your disability benefit may reduced due to the number of months you have already received SSA Retirement benefits. [Google POMS RS 00615.410 Reduced DIB after RIB Entitlement (A then HA)].

The determination of whether your SSA DIB benefits will be reduced, and (if so) by how much, requires a special benefit computation by SSA. It is highly possible that your benefits may increase to a higher monthly amount.

Also, there is the possibility that you might qualify for Medicare. A & B prior to age 65 based on your disability.

Finally, filing now protects your DIB application date, potential retroactivity of your DIB benefits, and appeal rights under the SSA Disability program.

BTW...it is NOT true that it will take 2 years to process your disability claim!!

Each claim is unique, just like the level of disability is unique to each person. During our careers both my wife and I have seen countless disability cases processed in a matter of weeks or a few months.

Even many claims that go to the Hearing level of appeal are processed to completion within one year, and for those appeals that are reversed to an allowance, most go back to the original application date (sometimes up to 12 months earlier with retroactivity) based on the date SSA establishes that your impairment is severe enough to be considered disabling under their rules and regulations.

Contact SSA now. The date you contact them to set up an appointment to file is crucial to determining your Disability entitlement date, Medicare eligibility date, and disability benefit amount. SSA cannot refuse your right to file.

If you don’t file, you will get nothing.

Mark

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/29/2019 2:49 PM DST

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Thanks J-o-h-n (if thats your real name!),

Couldn’t find the actual post and I actually filed in Dec 2018. It’s just now getting interresting!!!!

Jc

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j-o-h-n is my nickname my real name is "Nickname"....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/02/2019 12:38 PM DST

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Hi Jimhoy,

I second what dadzone43 has said. I'm a psychologist (but in Australia).

Just to summarize:

- I'm afraid that you guys this age try to tough it out and don't want to tell anyone your problems - that gets you into trouble in these circumstances as people think "you're ok". Be honest with the psychologist, tell them how its affecting you and if you cry, that's okay - normal reaction that we expect.

- Make sure that you get as many letters as you can. Get your medical people to address the guidelines. Take the guidelines to them and get them to mention ALL your side effects using the words from the guidelines.

- get letter from workplace, coworkers, family etc detailing their observations in day to day difficulties you have. In Australia, I get my clients to ask them to write it on an affidavit (which is a legal document) - don't know what it could be in the US.

- write some notes for yourself and detail your symptoms under headings.

FOR EXAMPLE,

# physical (sweating, dizzy, fatigue),

# psychological (anxious, flat, overwhelmed),

# cognitive (memory issues, word recall problems, concentration, difficulty doing more than one thing at a time, hard to learn new information) and

# social (becoming isolated, not wanting to go out) etc.

Then give a copy of this list to the Psychologist - tell them it was suggested you do this as you were worried about being all over the place in the assessment. We like clients to do this as its in your own words.

Good luck. Remember, most people become psychologists because they want to help people!

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I really, really wish I had remembered to do what you suggested. Found a reminder note in my pile but never put 2 & 2 together!!

Interview went like crap!!! We’ll see where the chips fall now!

Jc

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Good luck. Hope the psychologist noticed you were overwhelmed. They would have if they were any good.

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When the disability process was re engineered during clinton/gore years the burden of fully developing the case shifted from you to the state agency that does the determination. This was to speed up the process. Which used to take years

You are being referred to a psychologist to document the depression and cognitive problems etc that are not clearly or recently enough documented in the records they have for the state agency to make a decision

I have personally conducted thousands of these exams over the last forty plus years

No one is trying to deny your claim by this regerral. The agency is actually tring to help you to fully develop an area not adequatley documented in the recods they have and possibly critical in their decision making

Please leave tour anger and rsentment at home when tou see the doctor Their job is to do an independent examination and an examiner is specifically forbidden from commenting on the ultimate issue of disability That decision is made by the state agency on the basis of the data,test results etc provided by the doctor on the basis of your interactions with him or her during the exam

You do not need an attorney unless and until you have been turned down at the reconsideration level, which you should do on tour own if turned down initialky.

You are very likely an allowance. so getting a lawyer early on in a case like yours is simply giving away 25 percent of your back benefit for a case you would win on your own

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Good stuff girls and guys!!

So in summary for those that may find this in the future;

* I will hold off on lawyering up until or if I am rejected.

* I will attend the interview just as Eligard has made me, and respectfully place the cards on the table as they fall.

* I will help him write the book on “Lupron Brain”. “Chemo Brain” “Executive and Congitive decline” and will collect as much data as I can describing the same. I hope to share other’s stories with similar symptoms discussed on this site.

With as much as I have read and learned about this subject (even while chronically experiencing it), there is no reason that any Dr. should give the stink eye when a patient complains about these symptoms!

“You might get hot flashes and low libido”....my A$$!!!!!

Thanks

Jc

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Th extreme side effects of ADT should be considered a disability .. If someone has seen a person that they love go through ADT they will know the diminishing qualities. These ssdi folks are mislead and aiming not to pay .. us .. I’m lucky I have mine..but for how long ? I have no signs of pc and they tried to drop me last year. By some miracle I as reinstated..

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You got some misinformation from other replies in here. The process is a lot more complicated than that. On one end, it’s not true that most truly disabled people get denied at the initial and recon levels...on the other end, having a Stage 4 PCa diagnosis is not an automatic allowance.

The reason a high percentage of people get denied to begin with is that there are so many claim filed by people who clearly don’t meet the disability criteria. I have taken claims from women who are pregnant (with no complications), clearly not a disability since it will last less than 12 months, people who were still working and earning more than I was making taking their claim, and other frivolous claims, and even downright fraudulent claims, all of which must be adjudicated (you can’t deny anyone the right to file), and which just bog down the system and make it more difficult for the truly disabled to get their claims processed.

Just as an aside...One of the first disability claims I took was working at an SSA office located on the 5th floor of a bank building on the south side of Chicago. I greeted the claimant, a middle aged guy on crutches, and he moaned and groaned as he hobbled back to my desk. He looked and sounded pitiful. It was my break after the interview. As I looked out the break room window on the parking lot, a sudden rain shower came down. And there was my claimant, crutches tucked under his arms, racing across the parking lot like Usain Bolt. And there are more stories just like his. That’s the kind of crap that keeps decent people from getting a prompt decision on their claims.

I understand your anger and frustration at the bureaucratic process, and the hoops you have to go through to to prove the severity of your disability meets their criteria. I’m truly sorry to hear about how much your condition, and the side effects of your treatment have affected you physically, mentally, and emotionally. Unfortunately, like with airport security and several other issues, the few bad apples that try to take advantage of the system make it more difficult for the rest of us to get things done.

I hate to say it, but I am fed up with some of the replies people post in here about the Social Security disability process, particularly political bashing (the process has not changed much, if anything it has improved, over the last several administrations, both Democratic and Republican, including the current one). It’s to the point where I am on the verge of dropping out of this forum altogether.

Best wishes to you.

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I can take a smack on the face as well as I can give it!!

YOU ARE ABSOLUTELY RIGHT!!!

I went into this with a piss poor attitude! Maybe I set the mood for the others as well!!! I wholeheartedly apologize!!!

Through the mountain of paperwork and the hours of meetings & phone calls, the people I have dealt with have been extremely courteous and very helpful! Just waiting to hear the other shoe drop I guess!!!

It’s a mindset (in many cases justified) that dealing with the Gov will be a form of a root-canal. You only hear the horror stories never the good ones.

Maybe we change the phrase to “Trials and Tributes”?!!!

Jc

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Haha! 😀. I go in for a root canal🦷 next week, and you are right. The processes are not all that dissimilar. I have a lot of empathy for people going through the SSA disability program. By and large the people who work at SSA and the DDS’s are good, caring people. (But there are a few stinkers).

We are helping a neighbor file a disability claim for epilepsy. Frankly, I had to shake my head until my neck hurt at some of the seemingly stupid and redundant questions they ask on their forms. But I understand to some extent there is method to their madness. Still it is extremely frustrating to have to deal with it when you’re already hurting physically and drained emotionally.

You have my support and prayers. Have a great day! 😀

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I don’t know if this will go out to those that offered me help a month ago but here goes nothing (and I mean nothing).

I had my SSA evaluation last week.

I could do most of the tasks he asked me to do. Maybe 24 to 36 simple math problems, very slow and after correcting so many mistakes, got 12 complete in the time allowed. Looked to be getting more difficult as I went on. Sounded out most of the big words by syllable and the puzzles took forever!! About 1/2 the word comparisons did not make sense but gave my most logical answer!!! I believe that I was smarted than a 5th grader!!!! Hindsight, I took my time to provide the right answer!! Should have answered at normal speed and failed miserably!!!!

He summarized it by saying that my cognitive ability is fine, that I only need therapy for depression!!!!! WTF!!!!! As my heart slid out my A$$hole and the the F&$#ing crying ensued, the day took a downward turn into the shitter!! And I thought I prepared myself mentally for this too but..........!

Time to lawyer up I guess!!!

Jc

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