What I didn’t expect was to cry.
Yep, tears of rage and indignation flowed. It was a bad fatigue day, which may have contributed. But mainly, well mainly I was enraged at the SSA officer’s comments.
“Initial physical therapy evaluation was difficult because claimant did not fully participate and refused to attempt certain exercises.”
Physical therapy is painful and they have to initially determine a good level and work up from there. So yes, during the exam he refused to do some exercises that would have been too excruciating.
And if they’re trying to determine your pain/stiffness levels, why isn’t “I can’t do that” a reasonable response?
“Claimant reports that physical therapy has reduced his symptoms considerably, but objective measurement of his progress is difficult due to his exaggerated reports of pain in nearly every joint in his body.”
He does hurt in almost every joint in his body. I’ve heard just about every single one of his joints pop. If he lets them go for too long, the pressure builds up and causes pain. By that point, when they do eventually do pop, it’s painful enough that he yelps. It takes a lot to make someone with fibro yelp.
“He stood a few times during the hearing but only for about a minute each time. His manner was somewhat dramatic.”
It’s not that he has to stand for long periods of time. It’s that he can’t sit for long periods of time. He needs to be able to get up and down as needed. Usually that means sitting for 15-30 minutes, then getting up for one to three (get something from the kitchen, bathroom break, just get a break from sitting).
And “dramatic”? Him sitting for thirty minutes is, as best I’ve observed, the same as the rest of us sitting down for about four to five hours straight. When you get up after that, are your movements not dramatic? Of course they are, because you’re stiff and need to loosen up by walking around/bending/stretching.
“The hearing officer saw no healing scratch marks, scabs or scars to suggest previous scratching and drawing blood as he described.”
Tim heals ridiculously quickly. We joke that he’s Wolverine. And he’s on medication that, along with pain, helps with the itching. Plus he can take frequent showers, which numb his skin. So he is scratching more lately, but the evidence doesn’t last as long.
As for the “drawing blood” comment… The officer misunderstood. He was saying that, when extremely stressed, he’ll scratch so hard as to draw blood. He wasn’t saying he was currently doing that. He’s stressed, but not yet at that point.
“Claimant’s testimony that 55% of his days are bad days when he is lucky to get out of bed is inconsistent with his ability to keep scheduled appointments.”
First of all, we try to keep the combined number of appointments for us to three or less a week. Ideally, no more than two. So that argument makes no sense.
Second, what choice does he have, exactly? We can’t just constantly reschedule, and he needs those appointments.
Third, don’t ask someone with ADD to quantify something so abstract. Heck, don’t ask chronically ill people to quantify something abstract. We’re exhausted, which affects memory.
Four, when you’re in constant pain/exhaustion, most days you feel lucky to get out of bed. But if you say that, you’re afraid of sounding like you’re exaggerating. Which was apparently a valid fear on Tim’s part.
Fifth, even when you’re lucky to get out of bed… What choice do you have? Especially when lying down too long also causes pain.
The SSA officer continued:
“It is also inconsistent with wife’s testimony that bad days occur 3-4 days a month.”
Clearly, he and I were answering two different questions.
I thought bad days meant the ones where the pain was so severe that he couldn’t drive or otherwise function “normally.”
The ones where he’s in so much pain that he goes to lie down because it hurts even to sit, but he gets back up after an hour (or less) because it hurts too much to lie down, let alone sleep.
If she’d asked me how often he was bad enough to be lucky to get out of bed, I’d probably have answered about the same as him. I might have said it was more often than that.
But really, how do you quantify something that happens day in and day out for years?
When you work at home and so you see him just about every hour of your lives, until good and bad days — actually until all days, weeks and months — blend together in your mind?
When you’re so preoccupied with work, your blog and your own fatigue/depression that you can’t watch his levels of pain with the same eagle-eye a healthy partner might?
And how can you keep a running tally of when he’s actually having an okay day versus being all stoic and manly — or maybe just powering through his bad days to compensate for your limits?
Answer: You can’t.
“Despite claimant’s description of severe pain and limitations, he has declined treatments that might help him and clearly was not cooperative with physical therapy.”
He rarely missed an aqua therapy appointment. Maybe three, compared to the 40+ he had.
He might have declined to do certain exercises that caused him excessive pain (they all caused some pain), but he complied with most of them.
In fact, he was doing well enough that the therapist was increasing the length of his workouts and incorporating new exercises. And let’s not forget: It wasn’t his choice to stop aqua therapy!
As for treatments that he declined…
He didn’t decline knee treatments. The doctor suggested them if Tim had a flare, which wasn’t the case at the time of the appointment.
And yes, Tim could (and probably should) get cortisone shots for his back. Unfortunately, the PA said words that made me lose hope: “And the risk of paralysis is very small.”
Tim’s already paranoid about being a burden on me. He’s convinced he’ll be the unlucky minority, so he doesn’t want to do it for something that provides temporary relief.
I’ve told him we need to seriously discuss it if his back gets any worse. And I may ask him to talk about it in therapy. (But for now I’d prefer him to deal with the other stuff like, ya know, the occasional suicidal ideation he experiences.)
Besides, the cortisone shots in this back won’t help all of the other debilitating pain he feels in, say, his hips, shoulders, etc. And he only got offered the one on the back because of slight lumbar degeneration.
There’s nothing objectively wrong with his hips, hands or shoulders — that is, nothing that would show up on an x-ray — even if doctors would be willing to give him that many injections. Which I can’t imagine them doing.
“Claimant report to [SSA psychiatrist to determine ADD claim] suggests a tendency to exaggerate since he told her he has had about 30 jobs but on his Work History Report, he listed 12 since 1995.”
Here’s a thought experiment:
- You lost your last job 8 years ago.
- You were hired there 10 years ago.
- Most of your adult jobs prior to that lasted less than six months. Most four or less.
- There were stretches of unemployment while you recuperated your health/could get hired.
- In between jobs, you sometimes went to Labor Ready for day work.
Great, now guess how many jobs you had between 10-20 years ago.
Oh, I forgot to mention that you have a condition wherein:
- (Even more often than the rest of us) You often forget why you went to a specific room
- After pulling out your iPod, you can’t remember what you were about to look up.
- If you’re interrupted for even a few seconds, you won’t remember what you were saying.
Now guess how many jobs you had. Nope. Wrong answer. You’re exaggerating.
Now, no one is completely imperfect — not even the SSA. I’ll admit there are a few places that Tim inadvertently shot himself in the foot.
For example, he apparently hasn’t made it clear to his therapist how common the suicidal ideation is. It flits through his mind a lot, even though he doesn’t want to act on it.
I’ve told him he has to be more open about that. Depression is the leading cause of SSA disability for people under 44, so that may end up being the most compelling argument.
Second, he apparently once told a physical therapist that he walked six miles the day before.
Neither of us remember this, but he probably did walk to and from the pool hall at some point. Because, as much as I love him, he’s an idiot about accepting his limits. The ADD doesn’t help.
But just doing it once means very little. People with chronic illness often can do something. But only once in a great while — and we’ll pay for it tenfold.
Third, the SSA officer didn’t understand the pool table idea. Leading to the last comment:
“His ability to play pool frequently, his ambition to compete in pool tournaments and his ability to travel by plane seem incompatible with the physical and mental limitations described at the hearing.”
Okay, I get the first two bits. Initially, I didn’t believe pool would help either.
And I get doubting social anxiety if someone wants to play in a pool tournament. But he’s planning on wearing headphones and only talking to his opponent when absolutely necessary.
That just leaves the plane travel comment. To which I say: Huh?
You can get up during a flight, if briefly. And he can stretch out during the layover.
Plus he wasn’t implying that he was carefree the next day. He’s stiff and creaky. But people with fibro can travel by plane. Just ask Revanche.
Bright side: He’s sick
The SSA officer noted that he hasn’t had a serious flare up in years. Well… guess who has four rashes on his torso? That’s in addition to the ones around his armpits from wearing deodorant for the hearing. All of this before the letter arrived.
We have an appointment with the dermatologist on the 12th, but we may need to see his PCP first if it looks like the situation is getting significantly worse — or better. We need the flare documented somewhere.
There’s nothing like being mildly encouraged that you’re in more pain/discomfort so you can prove you’re really sick.
On a completely separate note, please consider tweeting my financial health post — adding #FinHealthMatters. If I get enough tweets, I could get my FinCon expenses reimbursed completely! It’s tallied through July 6th.