• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Help (Arizona) need new attorney SSDI hearing

Howard

suffering ceases when craving is removed
Messages
1,332
Location
Arizona
Encouraging

Spoke with my attorney last night for the first time. She came off as being both intelligent and knowledgeable, especially in regards to the presiding judge.

And she believes the judge will give me a fair shake, despite his probing nature (which I feel may be advantageous).

In the meantime, I need to ready myself by making a cheat sheet of things to remember.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I personally have come to understand your sense of humor and sarcasm, and your metaphorical and whimsical wordings, @Howard
and it's a good style, for expressing yourself, and for social interaction.:)


Yet, I suggest that even here, on this thread, which is on subject of your illness and disability,
that you call that item, you mentioned, not by anything but what it truly is:

It IS your " reminder list " ...
of things you want yourself to remember to tell the judge,
in order to inform the judge , how limited your daily life is, due to the severity of your condition.

It IS one of the " tools "
that you use,
and most all of us, and many ill and disabled people, must rely on, in order to function the best we are able.

These reminder lists/tools, are things you (we) did not need, before we were ill, but we need now. For any task, including the difficult one of interacting with others and communicating, with anyone, including a judge. Answering questions, must be prepared for in advance or you would likely forget important true facts, and pertinent ones to that setting. The info most important to the judge.

I know what you mean, yet when explaining to ANY other people,
I would stick with simple, clear and honest, straightforward language and wordings, for this topic and this situation. …
In addition, remember to plan to Answer the questions a judge poses, truthfully, and more fully than yes or no if possible (while sticking to the question and to how it impacts daily activities and work)
While being totally honest with the judge, DO not sugar-coat, as we were all taught to do in order to act like polite, considerate people.
Example: "Do you feed yourself?"
I need 100% help from another person in order to prepare my meals and all my drinks and foods, and to put them near me. Then I can feed myself.... (possibly your specific ways you do)
Because... (whatever your reasons are) …. I cannot sit up, or cannot sit up long enough, to do preparations of ANY foods or meals, even simple ones. Or, whatever is the case. Perhaps you prepare something VERY simple, like a sandwich, if the items are all ready and in reach, or perhaps you open a container of soup that is all prepared...etc.
You might add, additional truthful facts that directly relate to the task, such as:
I don't like requiring help for this, but my mobility is extremely minimal, and..... whatever other symptoms you get, including pain, when you go past those limits.
Such as, in a task like bathing or washing, as you have said, when you washed your own face and part of yourself, you were totally wiped out afterwards, and could move less and were in more pain.

These are your "things to remember" and they are not, anything else, so it's best to call them what they are. I believe it is important , on the topic of disability and hearings, that you not use colorful language that could possibly falsely mislead anyone. This is a time for you to stick up for yourself, in a clear, simple honest way.
And not joke about how to prepare, in ways that someone else might not get the joke. Even here, on a forum.

Just my ideas, as I am trying to be helpful.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I have just read this @Howard And I wish you all the very best with the hearing. My thoughts and prayers and support for you, and your wife, that this will work out well.

There is such wonderful, varied, but all pertinent advice from everyone here. I can't offer legal advice (I don't know your system, and I'm in UK and have never applied for long term disability here.) But I offer you my most positive thoughts
 

Howard

suffering ceases when craving is removed
Messages
1,332
Location
Arizona
@Shoshana

I truly appreciate your efforts regarding this communique.

As you've clearly gathered, it will be extremely difficult for me NOT to minimize my condition. It's the way I was built. It also contributed to my current physical state. So that's a very good observation. My wife and my big sister also suggested much the same. I may be mentally okay, but physically I'm a wreck. I need to get that point across accurately, but my lifelong mindset is inherently opposed to expressing in this manner.

You may be happy to know that I went over the list of questions with my big sister two nights ago over the phone. And she called me out every single time, “Telling the truth about my physical condition is not admitting weakness.” It's just so hard to go there.

Just like Mayo Clinic, when they insisted that besides POTS, there was nothing wrong with me. I fought harder and harder still, pushing myself physically until I finally collapsed.

And that's my other weakness … reacting poorly when people insinuate that I'm not trying my hardest. Like my current doctor. Like the previous judge. Like my ex. And maybe even my son.

My wife took pictures of me the other day for the judge. It was such a devastating experience, viewing the images, I can' barely even talk about it. I look awful. I hadn't seen my bodily self in the mirror for over four years. My body is absolutely destroyed. If anyone saw the way I looked right now they would think I am near my end, very near.

So yes, you're quite observant and I agree with everything you wrote. I will also use the details you and others have provided for an outline. I just need to spend my weekend practicing out loud and not minimizing.

Out loud words and questions are difficult to contend with, and sometimes overwhelming when operating at 80% mental efficiency, as I am now.

Plus, it's over the phone, so I won't have any visual cues. I figure with the blinds drawn all the way, and the refrigerator unplugged (noisy), that'll set the stage for success.

I've always appreciated your posts (I'm hoping that conveys here). Thanks again, one more time!
 

geraldt52

Senior Member
Messages
602
@Howard, Shoshana has given you very good advice. My attorney, who had done nothing but disability for many years, had told me before my hearing that people with disabilities routinely understate their limitations, because our society tends to view any limitations negatively.

It is a fine line trying to be truthful without appearing to be exaggerating, but something worth considering, perhaps "rehearsing" in advance. In the end, my ALJ accused me in so many words of being a liar, so I guess I didn't do such a great job walking the fine line...on the other hand he blatantly told my lawyer after the hearing that he didn't believe in CFS and she should submit such cases as somatoform disorders...so I was probably doomed from the get-go.

I truly hope that you get a sympathetic ALJ and all goes well. Don't let it get you discouraged though.
 

Moof

Senior Member
Messages
778
Location
UK
I hope it goes well for you. I don't know how these hearings are structured (I'm in the UK), but welfare advisers here tend to support their clients – specially where they tend to minimise their symptoms – by questioning them about how specifically they manage to do things.

So, for instance, if the judge asks whether you can prepare a simple meal such as a sandwich most of the time, the adviser could ask: How far away is the nearest shop where you could buy the ingredients? How you would you get there? Could you visit whenever you need to buy food? Do you have special dietary needs that make it difficult to buy ingredients locally?

Followed by: What if there are no clean dishes and cutlery? Are you prone to dizziness and falls if you stand up to prepare food? Do you risk cutting yourself when you handle sharp knives? Can you always get up to make a sandwich when you need to?

You get the idea! I really hope you're successful.
 

Howard

suffering ceases when craving is removed
Messages
1,332
Location
Arizona
The hearing was mentally taxing at times, lasting nearly an hour and 45 minutes. I was told that cases typically run 30 minutes to upwards of an hour.

In this post I shall merely provide a brief outline of what transpired, as I am still sort of wrecked, over 24 hours later. I also want to include what I can, while I remember specific details and impressions.

No commentary is necessary.

I am posting this in efforts to help others who may someday follow this same process. I also realize experiences will vary across the board depending on each individual's circumstances.

  • Judge focused on my daily rituals… what I did all day long to occupy my time.
  • Judge quizzed me extensively regarding last time out of bed.
  • Judge had very little interest in my personal background, things I used to do, skills, talents, hobbies, or activities missed with my wife and son (in regards to my former life).
  • Judge was curious regarding potential physical therapy in order to resolve my formally undiagnosed “condition”
  • Judge was focused on my lack of visitors, recent human contact.
  • Judge bypassed any anxiety, stimuli sensitivity, or depression related issues past or present.
  • Judge was focused on my available amenities, in and around my bed, as well as amenities within the condominium complex.
  • Judge was not interested in my bathing / cleanliness rituals or difficulties.
  • Judge was not interested in my restroom related struggles.
  • Judge was not interested in digestive related issues.
  • Judge was highly focused on timeline details, issues and structure… which was by far the most difficult part of the hearing, despite having written notes to remember things in advance.

Overall, the judge asked probing questions and was relatively pleasant about the matter. I have no gripes in regards to his behavior or the way he treated me. He did not talk down to me in any way or fashion… besides not understanding why physical therapy wasn't an option (although my perception may be overly sensitive on that front).

On my end, we seemed to be missing a fair amount of documentation, stuff that I could not have possibly been aware of on my own, so I cannot punish myself. In response, the judge requested that the attorney provide the supporting documentation within the next two weeks.

The judge also did not receive digital images of myself and my immediate living conditions, but asked that these images be re-sent to the courts for review.

The judge also said it's possible I may need to do a physical assessment of some kind, which would most likely require medical transport to a facility or hospital. He asked my attorney to check and see if there was a way for them to do this check in-home.

The attorney didn't say much, nor did she interact much with the judge. That may be typical, so I have no opinion. Actually, she did ask me a couple of questions about my napping ritual during the daytime.


A final decision may take between 4 to 6 months.


Final note: In subject matter the judge found relevant or more interesting he typically asked a succession of follow-up questions.

I tried using this to my advantage, but there's no way of knowing how I came across. But he never once cut me off, nor redirected me.

Okay, that's it, I'm beat.

Thanks again for everyone's help getting me through this.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Howard
I'm so relieved to hear from you !!! The perfect Thanksgiving gift .....

Thank you for leaving a link to this thread, I'd forgotten it, if I ever knew it, so didn't know the hearing was going to be telephonic, which does deprive you of visual cues, but is fathoms easier than the jolting trip to a hearing, and deprives the judge of visual cues, which might or might not have been helpful. Who knows. Some people find the sight of suffering and illness distasteful and frightening, and react in strange and unfathomable ways.

I don't think it's going to take as long as the timeline proposed, but then, I tend to see things thru rose colored, hopeful glasses.

It sounds like you did really well, Howard :thumbsup:. Rest and recuperate. We're all so glad you're back!! :heart:
 
Last edited:

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
Thanks for that sharing, @Howard and the feedback , for all of us who have been thinking of you,
and the info that I do believe is helpful to others.

4-6 months wait....ugh....

what I found most surprising, was no interest in bathroom or bathing difficulties....

I am glad you have this huge step behind you. !

Will be thinking of you , as you now attempt to recupe from the effects of both, the build-up prior anticipation, and yesterday's experience,
the combined aftermath.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I'm glad you got through that today. The info you posted is very helpful. Hope everything goes okay for you.

I'm surprised like @Shoshana that he wasn't concerned with personal care difficulties. I would think that would definitely impact your ability to handle a job, i.e. if you can't take care of yourself, how are you going to take care of something an employer needs you to do?

Please take it easy for a few days. That experience sounded rough.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
if you can't take care of yourself, how are you going to take care of something an employer needs you to do?
Or to even get there. It does seem like an odd oversight.

I have other thoughts, but I'm so ignorant of the process that I hesitate to bring them up, though, like a true sniveling coward, I'll chime in if someone else who knows more does ....
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Howard @Judee
OK, I've read through this thread from start to finish and I'm wondering about the following:
On my end, we seemed to be missing a fair amount of documentation
The judge also did not receive digital images of myself and my immediate living conditions, but asked that these images be re-sent to the courts for review.
This is one of a lawyer's given tasks, to know what the court will need and to provide all documentation in advance. It's part of what makes them worth the money.

I thnk that @Howard (or your wife or sister) may have to ride herd on the attorney, just to make sure that she's followed up on the required docs and pics, and that Howard et al are aware of what the next step is and what the time frame on that is, what deadlines are in place and what has to be done to satisfy them, as well as the request for an in-home medical evaluation., or the time frame allowed if you have to somehow get to an outside medical facility, as well as a clear statement as to what that evaluation should entail

I think it might be perilous to wait for the attorney to fill you in, or to assume that she's remembered to do what she's committed to, she's probably juggling severa lcases and may accidentally drop some balls. Just to be on the safe side. DOnt mean t spook you.

I seem t be crshing again, apologies for typos and bluntness of expressin.

Is your wife holding up OK? I hope things are a little smoothr for her, as they will be for you. The hardest part is over, that terrifying first step.
 
Last edited:

Howard

suffering ceases when craving is removed
Messages
1,332
Location
Arizona
Thank you for the responses and well wishes. It's a huge relief that this event is over. The decision is out of my hands. I am letting go! Seriously... I'm not feeling traumatized, just a bit fatigued.

Regarding the bathing and restroom related activities, I was surprised by the lack of profound interest as well… especially for the latter, which also involves a certain level of risk, or a “danger” factor each and every day.

In any case, I believe a physical assessment would seal the deal for me, if indeed I had to go through with it. Anyone laying eyes upon me couldn't help but be convinced… as embarrassing as that sounds.

And without my wife's bedside support I don't know if I would have made it through the entire hearing, as I experienced physical difficulties right off the bat. Bad timing. Bad all around. But the judge was very understanding, and made concessions (and who knows, perhaps it'll work out in my favor).

Also, the attorney is already following up on the missed documentation, so that's a good sign. She seems competent.

I don't think there's much thought required beyond this, or beyond that. To the best of my understanding, I believe the outcome is now far beyond my control. So I'm off the hook, right?

Without my “presence” practice I would absolutely be driving myself crazy right now, critiquing my responses, playing the game of “what-if” … or somehow punishing myself over a forgotten detail or two.

And if there's one benefit to this illness, it's that I need to choose wisely how I use my limited energy reserves each and every moment of each and every day. Obsessive thinking and ruminations are no longer an option. I now find my fun by other, simpler means.

And I apologize if any of these details were too intimate or too excessive (I wasn't particularly clear-minded yesterday). Knowing where to draw the line is, and never has been, one of my strengths.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Also, the attorney is already following up on the missed documentation, so that's a good sign. She seems competent.
That's a huuuuuge relief. I wasn't sure if she was from the original corporation of attys that ignored you for so long or if you'd found someone new, and if that information is in this thread, I plead serious brain issues right now. Either way, the fact that she's following up is deeply encouraging :thumbsup:.

Trust, but verify from time to time ;).
So I'm off the hook, right?
Yeah, like life ever works that way ... well, at least mine :aghhh:. That looks more like a "Waaaahhhh" and an "Argggghh". I meant "Arrrgggghh".
And I apologize if any of these details were too intimate or too excessive (I wasn't particularly clear-minded yesterday). Knowing where to draw the line is, and never has been, one of my strengths.
Nor mine :zippit: (you might have noticed?), but they were just the right amount, in just the right intensity, and in just the right way. They conveyed the essence without overloading the recipient and without sugar-coating or dismissing their weight and continuing, draining, impact.

That you maintain your keen intellectual curiousity and sense of humor in the face of the physical/psychic issues you have to deal with every day, all day, is a testament to the human spirit, and to your human spirit, specifically.

My God, I just forgot how to spell curiousity .... hmmmmm .. let's see ..... curious ..... yeah, that's right ...... but curiousity isn't? ...... curiosity? Wow, that looks really odd :confused:, but the little grammar bas ..tions with the squiggly red underliner tell me that it's OK, so I'm going with them today :meh:.

And now, I'm slouching grumpily back into my cave :grumpy:.
:) :hug: :heart:
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
It's a huge relief that this event is over. The decision is out of my hands. I am letting go! Seriously... I'm not feeling traumatized, just a bit fatigued.

Without my “presence” practice I would absolutely be driving myself crazy right now, critiquing my responses, playing the game of “what-if” … or somehow punishing myself over a forgotten detail or two.

And if there's one benefit to this illness, it's that I need to choose wisely how I use my limited energy reserves each and every moment of each and every day. Obsessive thinking and ruminations are no longer an option. I now find my fun by other, simpler means.

The entire above post of yours, which includes these 2 sections I chose to quote, is the most helpful of all, in my opinion,
for myself and any of us, to ponder, and to learn from . Thank you for sharing all of what you have with us, as ,

while we all responded solely in hopes of helping YOU, your sharing has surely much capacity for helping us, in return.

Again, we didn't do anything in hopes of any return, yet I cannot help but notice, that you are returning, in more ways than either you nor we might have envisioned.
The info itself , back and forth, was all informative and potentially helpful , for you and for others, but I am even more struck now,
by how much this most recent post of yours, gives us such significant and useful perspective to contemplate, for those of us who might want to learn from this .

And to think, Howard, you nearly did not trust to share enough of all of this experience, so that you and we would not have all grown from it.
Congrats, on the daring and the sharing, which is huge, in itself,

AND on accomplishing that additional , daunting-seeming task ,
of allowing yourself to go through with the hearing.
What accomplishments, both are, regardless of outcome, which as you said, is out of all of our hands,
while we hope it will further bolster and support, both you and your wife.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
The only other small point I will make, on the hearing, itself,
is that I find it positive, that the judge said the assessment "might" be needed, and not that it definitely would be,
and that the judge showed some deference to the fact that this might impose significant hardship, in stating that the lawyer should look into if this could be possibly done at your home,
and that the judge did not immediately conclude it MUST be done, and did not dismiss, out of hand, the notion that this might be a real barrier, and might not be necessary.

The decision on that, will be made after receiving the materials requested, which include the photos , so I see that all, as a plus, and additionally, that decision is also out of your hands or ours.

So I can then refer myself back to your own excellent writing on perspectives, on things of that category.
And relegate it to that bin.
A huge category of stuff, which for one, I myself, want to learn and to practice,
to look at with some of your outlook.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I'm glad the hearing day is over for you @Howard and now you can relax, and rest.
Yes there are some follow-ups to do but have a few rest days first maybe? And get a little more strength back.
I was wondering how Monday had worked out for you so it's good to hear from you.
Take care. Kind thoughts.
 

Moof

Senior Member
Messages
778
Location
UK
I'm so glad you got through it, @Howard. As for the judge seeming disinterested in some aspects...my instinct is always to try and play whatever game they want to play. If the focus is on areas that seem anything from surprising to entirely irrelevant, so be it – at least they're focusing on you and your life. The difficulties in ME are so all-encompassing that even the 'wrong' focus should provide the evidence they need.

All you can do now is congratulate yourself on getting through it, focus on recovering, and wait for the outcome. As you say, there's no point in worrying about what you might have said, or trying to second-guess the next move. If they approve you, all well and good; if they don't, your attorney will check for points to appeal or errors of law in the decision. You've done your bit, now take the time out that you need.