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How to convey "can" but "shouldn't?"

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Posted 11/19/2013 3:05 AM (GMT 0)
I've discovered I can drive in more comfort than I could before, without the CP kicking in at the time.

However, I've also discovered that while I can make longer rides in more comfort, the price I pay is bigger.

When asked by my docs about sitting, how do I convey this?

Of course I "can" sit for an hour driving.  Will I pay dearly for it for the next 2 days?  Yes, definitely.

M.

Posted 11/19/2013 3:22 AM (GMT 0)
I think you are overthinking it. I think it's pretty clear to say "While I can sit in a car (or whatever activity)...... it puts me down for 2 days.... so I always have to factor that in when I do anything" kind of thing.

With my health issues - there are many things that I "can" do. That said, they will put me down from anywhere to a day to even 4 or 5 days. I have to think about that when I go to do ANYTHING. Frustrating but the reality of things.

:) --Tina
Posted 11/19/2013 8:46 AM (GMT 0)
Thank you Tina.

I was thinking about the "conveying" part because I have applied for Disability.

A comment my (ex) therapist (I graduated) made grinded on me.  I made that comment about "cannot" sit for 1-2 hours straight and she jumped on how I sit for our weekly appointments "just fine."  She also flat out stated she would not support me in Disability.

So when I go for my IME, and as I continue treating with my PCP and she asks about how I feel, and my CP and restrictions, I want to know how to accurately convey without sounding absolute or giving room for doubt.

M.

Posted 11/19/2013 4:22 PM (GMT 0)
I feel for you, about 5 years ago my sister talked me into taking a 7 hour drive to Ohio to see a relative. We stopped many times, on the way back there and back. It did not matter, when I got home I was in bed for a week. I was so surprised at how bad I felt, never again.

I will go about 3 hours maybe 4 to get to the ocean in summer, stopping all the way, but I still have at least 2 days down.

Kathy
Posted 11/19/2013 4:29 PM (GMT 0)
Does anyone have any ideas on how to convey this accurately to our physicians?

M.

Posted 11/19/2013 6:03 PM (GMT 0)
If it's for the purpose of disability, I would say that no, you can't sit for two hours (or whatever activity).

We probably could push ourselves to do a whole range of things - from normal stuff to even ridiculous things. But that doesn't mean we should or won't end up hospitalized lol.

During your IME - you just say you can't do those things without intense pain or being in bed afterwards.

I think it's pretty clear cut.
Posted 11/19/2013 6:38 PM (GMT 0)
Blessedx8 said it very good.
I really think your physical therapists was outta line on her comment. Why would you even be in PT if you didn't have these problems, she made a snap judgement call and you probably should not use her on your behalf at your Disability case. Plus your probably not sitting for all that time in one position during PT. I go back and forth between chairs and standing at home.
I had one rude doctor say to me, how can you have RA when you get to your morning appointments on time, what he doesn't know is that it is a hard strugggle for me every morning to hit the alarm and get up, I could easily stay in bed, but then what good would that do, plus If I miss a doctor's appointment I can be dismissed from them and I do not need that. Plus life in the real world still goes on, which I learned early in life (I was raised in a very strict family with a belt to the backside if you misbehaved).
So be honest as best as possible if it hurts for you to drive for an hour than say yes, if it takes 2 hours for you to hurt then put that.
Posted 11/19/2013 6:46 PM (GMT 0)
I would find a more supportive therapist
Posted 11/19/2013 9:07 PM (GMT 0)
I "graduated" from seeing her when we moved from MA up here to NH, so I do not see her anymore.  But no doubt, SS will be asking for her records.

I'm struggling, mentally, because I'm a happy person.  Like that makes sense, right?  So I find a lot of people give me quizzical looks, including some practitioners, when they hear, or I relay, what's going on in my body/life.

I "appear" well-adjusted and managed.  But see, that's just it.  Things are very tightly managed.  It's because it's managed I've even been able to get this far.

Pulling the rug out from under me will cause me to slip, yet verbalizing my desire to maintain the present course is met with how I "shouldn't" need PM care since each surgeon said it was the other one's issue.

It's actually a combination of both situations that cause me pain.  I almost feel like I have to go in there and act miserable.

I can keep this boat afloat, but not without their help.

M.

PS:  Char, the comment came from my (previous) psych therapist, feeling I "shouldn't" be on meds, that I don't "seem" to have CP, that I "should" be healed and moving on.  She'd shake her head at the mere mention of a single Percocet.

My PT (my new one) is totally awesome.

Posted 11/19/2013 9:30 PM (GMT 0)
I think you are over thinking this and putting way too much emphasis on it. These particular medical records are not going to be the ones that are the deciding fate of your claim. It does not matter what this therapist thinks about you filing for SSD either. What will help decide the fate of your claim is if you can be re-trained into a job you can do with your limitations, a functional capacity evaluation to see what you can & cannot do physically and what the medical drs are saying about you.

If anything is not clear about your condition, then SS can send you to a dr to get his/her opinion. When I worked I handled our SSD claims on our clients and usually these appts were very helpful. Also, just so you know the government does not say these drs squat for their evaluations either. I have seen some comments from people saying the SSD dr cost them their claim. I have never seen that happen.

You need to just be honest when questioned. Over thinking & over reacting will get you in a lot of trouble.

Susie
Posted 11/19/2013 10:14 PM (GMT 0)
I was using my experience with my psych therapist as an example of where I tried to convey information and it was dismissed and disregarded.

I am not pinning anything on her, nor am I relying on her, individually, in particularly.  I was attempting to illustrate an experience and ask for help or  ideas, perhaps ways to more effectively communicate.

Perhaps that's why I posted here, because I do not want to overthink or overreact.

M.

Posted 11/19/2013 10:30 PM (GMT 0)
I think it really boils down to what others have already said..Just be honest when filling out paperwork or talking to any Dr. and you can't go wrong:)
Posted 11/19/2013 11:06 PM (GMT 0)
Merrida, like they said "dont overthink it " remember we discussed the words to avoid "never " always " impossible " cant ", stay away from the words that imply your life would cease if you did something!

If I can stand for 2 hours I may collapse but not likely it would kill me.

When asked if I can sit 2 hours I say yes but getting up is the problem? Can I walk a mile? Ive been advised by my medical team not to so I'm not sure I haven't tried.

Can I wash my own hair? Yes I can with some adaptions such as sprayer, pitcher and a shower stool?

Honest, simple, to the point answers that mean I can but???? That's relevant because they know unless your bedridden with 24 hour nursing your likely at some point to have to wash your hair. If you say No Never, they know your likely exaggerating symptoms.

If the question is and this was one I answered on one of those SSDI papers. Do you cook? Im obviously not wealthy enough to hire a cook, I had 5 kids, and no partners, so answering no would have been a exaggerated answer. Of course I cook but I've had to change the way I cook, more simple meals, microwave, packaged meals, convenient foods, on feel better days " I make pots of stuff, chili, stew, dumplings, etc that doesn't require a lot of prep I cant do sitting and a lot of attention while its cooking and freeze leftovers for another meal on my bad days.

Keep it simple, keep it real, and dont overthink it!!
Posted 11/20/2013 12:20 PM (GMT 0)
Merrida,

It is very important to avoid those words - can't, always, never, etc...

Also - if your medical doctor is behind you getting SSDI and they fill out a residual functional capacity form (even your PM can do this - once you find one), the longer your relationship with the doctor the better, in my opinion. You may not even get sent for an IME. I had my PM doc fill out my RFC form and that is what the judge referred to during my hearing. I was never sent for an IME. You get sent for an IME when you are not regularly seeing doctors, or when they do not get enough information from those doctors to make an educated decision.

Regarding the sitting or not sitting, you can say, Yes you can sit for an hour but that it increases your pain and decreases your ability to concentrate and that when trying to get up afterward, the pain is even more or greatly increased, etc... This is what happens to me, so I have used what I would say in your place.

Hope this helps!
Trudy
Posted 11/20/2013 1:39 PM (GMT 0)
I'm just curious, but if you are awarded SSDI, how long do you get it for?

The system is very different here in the UK and changing again. I guess they think too many people are getting disability allowance and now they are making genuine people suffer in their efforts. They being the government.

I've been lucky, I get an award for five hearsay a time, then you have to go through the whole rigmarole again. When I first applied her, a doctor came to visit me at home. Since then I just fill in the form, it's a bit like war and peace lol, and so far I have had no problems.
Posted 11/20/2013 3:08 PM (GMT 0)
Trudy,

Thank you.  Vickie had mentioned phraseology to me, to steer clear of absolutes.  That's the kind of info I'm looking for.  I was honest as well as careful in the paperwork I filled out, trying to describe how I adapt to get activities done, what assistance devices I use, etc.

I think it's a general question, as I'm still waiting for my appointment with PMC up here.  My PCP is caught in a tight spot, - she's helping me out the best she can.  She's being told by both back surgeon and hip surgeon that I "should be fine," etc.

Yet,...I'm still having pain.  Better, but it's being pushed aside.

So when I see my new PM, this is where my questions/statements come into play.  Whether it's pertaining to SSD or PMC,....it's difficult to convey "the invisible."

M.

Posted 11/20/2013 9:39 PM (GMT 0)
I think when we sit & dwell on the what if's we get ourselves in trouble every time. When you get an appt with your new PM dr all you can do is be honest about your medical condition. Be honest & reasonable on what your limitations are.

Merrida you are not exactly a new kid on the block when it comes to talking to drs, you have had several surgeries and those happened because you were able to communicate to your drs what problems you were/are having. I feel like you get a little exasperated with us because you are wanting someone to tell you exactly what to say and that is not possible. The reason I say its not possible is because we are not the one standing there in front of the dr,. What I say & how I act in front of a dr especially a new one depends on that drs attitude towards me when they walk in the room. You need to give yourself more credit than you are.

Oh, before I forget, didn't you tell us towards the end of September when you went back home for 4 days that you had got yourself a new PCP and had an appt scheduled for this month? Hope that appt goes well. Take care....Susie
Posted 11/20/2013 10:02 PM (GMT 0)
I have an appointment for Friday with a new PCP.

That appointment was made before my mammogram and all that's followed.

As it stands, I'm retaining my PCP in MA for the moment as she's familiar with my complicated history, and when this popped up, it's an awful lot to be going on and try to transfer to a new primary as well.

I'm keeping the appointment to consult with him and explain, and he's been receiving my records and updates.

It's a process.  I'm keeping all my appointments with everyone concerned.

Just a whole lot of new doctors on board all at once,... along with SSD, and PT, and yes, I am overwhelmed transferring the lot.

M.

PS:  I am not asking to be told exactly what to say,....if my posts implied that, I apologize.  I was asking for suggestions and recommendations.  There are things I've learned since joining the forum that never would have occurred to me a year ago, which tells me,....there's always something new to learn.

Posted 11/21/2013 1:05 AM (GMT 0)
When I was filing for disability...my caseworker told me that an IME is only necessary/ordered if the person filing for disability does not have his/her own doctor who has treated and is knowlegeable in the condition(s) on the paperwork OR if the paperwork is incomplete and they need more info.

She told me they actually PREFER to hear from the applicants own doc because they have more info to share. So you shouldnt worry about the IME at all. And even if you get something in the mail saying you have to go to one...you should be able to call your caseworker and get them to fax whatever forms over to your own doc to fill out.

In terms of suggestions, when filling out the forms, I told it like it was...when I got to the list of questions you had to rate in terms of how easily you could or couldnt do them, I rated them as if I was doing them on my WORST day.

It doesnt matter how well you can do things on your good days...what matters is the bad ones...what matters is what you're capable of on the bad days....because you're filing for disability in the first place BECAUSE of those bad days....

Everything we do as chronic pain patients revolves around those bad days...our meds, our PT, our schedules, sleep...everything.

So on your bad days, how long can you sit for? And what are the consequences if you do. Don't be afraid to be honest about how bad things are when they're bad...and just because you have good days...doesn't negate the bad. You shouldn't feel like you have to qualify your answers because some days are better than others.
Posted 11/21/2013 1:15 AM (GMT 0)
Thank you for the help Lexi!  :)

I appreciate the input.

M.

Posted 11/21/2013 1:22 AM (GMT 0)
You just have so much on your plate right now that I hate to see your worrying over this stuff too. :(
Posted 11/21/2013 7:12 PM (GMT 0)
Hoping this didn't come back to bite me in the butt.

I had to fill out a form yesterday in PT.  The answers I was allowed to pick from did not allow room from elaboration.  They merely need to recalculate my progress, from what I could not do, to what I can do.  There isn't that distinction where ("yeah, but I'll pay for it.")

The whole "eval" was about conveying my function abilities.  (Concise).

The PT who administered it (not my personal PT, the owner), said to answer it simply, can I, yes or no....(no adjectives as it was a tablet and you just had to answer it).

So of course I answered "yes I can" to several questions because technically I "can,"...doesn't mean I'm not going to be down for the count afterwards.

Agh.

M.

Posted 11/21/2013 8:43 PM (GMT 0)
I learned really early on that the people evaluating these forms only have their own experiences to judge by. So if I know I can't perform to what their expectation of "can do" is, I put "can't" because then that leaves room for improv later on.

If someone asks you "can you tie your shoes?" and you say "yes" then they assume you can tie your shoes just as well as they can, because that's all the experience they have to go by...does that make sense?

Most people don't stop to consider grey areas...unless they themselves have ever been in a grey area.

So I hate to say it, but yeah, unfortunately it's probably going to bite you. But probably not as bad as you're thinking it will.
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