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Tarina

Am I "Disabled?!?"

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I'm struggling with this question.  I know I'm so different than my previous way of living and what I love to do, i can't.  Where my goals were set or future looked like before,need to be re-written and assessed.  In fact, EVERYTHING I do is different, and more difficult, and some things I can't do at all.....BUT...

Does "disabled" mean "not-abled"?  Because I AM able....I am able to do things differently than I did before.  I am doing my best to work around my deficits, using my creativity to stay positive and trying new things, that I never thought I would need to try because of my different abilities post stroke.

Am I just being stubborn?  I don't want to apply for disability, even though I know my finances are in dire straights as I can no longer work (like keeping a roof over my head and the heat on are serious issues!).  I dread the signature at the bottom of the application that agrees with the idea that I am "not-able".

Even though I am frustrated on a daily basis with everyday tasks, and my world has shrunk to the walls of my apartment, I only feel "dis/not abled" when there is something I previously did for my kids that is now impossible (try as I might, there is no work around) for me to do.  I can get VERY upset when this happens.  I can let go of so many things that I can't do right now, but in the months and years to come....I'm determined to regain those things that I enjoy doing.  But, its non-negotiable to me not to be able to do things that my children need me to do- this is my emotional Achelies(sp?) Heel.

Part of me- the logical part- says my children NEED me to apply for disability, because they/I need the financial security and...lol....well a place to live...duh.

But the other part of me doesn't want to agree to the definition....and doesn't want to be stuck with that internal identity.

 

Have any of you experienced this internal struggle?

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5 minutes ago, Tarina said:

I'm struggling with this question.  I know I'm so different than my previous way of living and what I love to do, i can't.  Where my goals were set or future looked like before,need to be re-written and assessed.  In fact, EVERYTHING I do is different, and more difficult, and some things I can't do at all.....BUT...

Does "disabled" mean "not-abled"?  Because I AM able....I am able to do things differently than I did before.  I am doing my best to work around my deficits, using my creativity to stay positive and trying new things, that I never thought I would need to try because of my different abilities post stroke.

Am I just being stubborn?  I don't want to apply for disability, even though I know my finances are in dire straights as I can no longer work (like keeping a roof over my head and the heat on are serious issues!).  I dread the signature at the bottom of the application that agrees with the idea that I am "not-able".

Even though I am frustrated on a daily basis with everyday tasks, and my world has shrunk to the walls of my apartment, I only feel "dis/not abled" when there is something I previously did for my kids that is now impossible (try as I might, there is no work around) for me to do.  I can get VERY upset when this happens.  I can let go of so many things that I can't do right now, but in the months and years to come....I'm determined to regain those things that I enjoy doing.  But, its non-negotiable to me not to be able to do things that my children need me to do- this is my emotional Achelies(sp?) Heel.

Part of me- the logical part- says my children NEED me to apply for disability, because they/I need the financial security and...lol....well a place to live...duh.

But the other part of me doesn't want to agree to the definition....and doesn't want to be stuck with that internal identity.

 

Have any of you experienced this internal struggle?

Hi, I can relate as I also experienced a similar struggle. I went through a period of depression when I as told I could no longer do my job. I did not want to apply for disability either. After a period of denial, I finally accepted the reality that I had impairments and they were correct in saying that I could no longer fulfill the duties my job required. Too survive, I had no choice and applied for disability. Fast forward to now, and life is better. I am alive, surviving financially and learning how to compensate for my impairments. Hang in there, friend. It's a tough road but there is light at the end of the tunnel. Wishing you the best! Michelle

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I echo similar sentiments of what michelle just said. I feel differently able,I tried going to my old workplace & realized there is no way I can keep up challenges of my jprivate job, so decided to go on disability, felt like looser for couple of a years, but getting that disability income made me feel less of burden on my family , & it was one of the best decisions I made for our family. I started volunteering at kido's school, library, red cross, hospital to keep myself sane & interacting with people which over the years have evolved & made all relationships more meaningful.

 

wishing you all the best in your journey to new normal.

Asha

 

 

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1 hour ago, Tarina said:

 

Does "disabled" mean "not-abled"?  Because I AM able....I am able to do things differently than I did before.  I am doing my best to work around my deficits, using my creativity to stay positive and trying new things, that I never thought I would need to try because of my different abilities post stroke.

 

Oh my gosh. I thought similar thoughts and still do on most days.  In the beginning, I often questioned myself for I thought I was 'broken'.  Though I can't remember my early recovery, I can say I'm not. Cognitively, yes, I have challenges. But I refuse to define myself as that. The State, on the other hand does. Social Security. The truth is, we are. But that is just a word. Like, survivor. That's what we are. Sure, we can't do things as we once did but it's not something we did to ourselves. We've become injured. Or at least I have.  It's a lot to consider for we see ourselves, or at least I did, as damaged goods. The groovy thing is, how I was in the early days, isn't anything like I am now. Your brain/body has a way to learn different way of doing things.

And being different isn't a bad thing.

 

What happened to you is a  big event and something that takes a while to wrap your head around.   You got this.. we'll have your back

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Oh yes that big scary word DISABLED. None of us want to accept that definition of ourselves. but it's only a word not who you are. And by using that word you can access the things you need in order to survive.  Just remember that word does not change who you are but does make a lot of things a lot easier to manage.  This thing comes with so many disadvantages don't cut yourself off from it's few advantages. And don't minimise your deficits when applying for help.  They want us to deny our realities so they can say no to giving us help.  As my grandfather used to say " there has to be some advantage to being a blind old age pensioner".  You never saw a man less disabled by a body that was failing on him! and he was over 90 when he said this.

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I took a much more pragmatic approach.  I've been paying for disability insurance for many many years, and I am partially disabled (partially blind, significant memory issues).  These don't prevent me from working AT ALL, but do affect my ability to work, ability to interact with my family, help kids with homework, interact with family and friends.  So I put in a disability claim, with supporting documentation from Neurologist, Neuro-Psych and a cast of thousands more, and I get a partial disability payment.  

 

This lets me work a bit more slowly, rest a bit more.  And that lets me be more engaged with my family.  I'm still not bad where I was, but the disability payout helps me to focus my cognitive resources where they are important.

 

I paid for the insurance cover, I fit their criteria, so I am entitled to it.  To hell with the label -- it's just a word on a piece of paper, does not have to affect how you view yourself.

 

My advice for anyone who is entitled to disability insurance (partial or total, is to reach put and grab it with both hands.  It goes you some extra time to work on recovery, be present for those closest to you, and enables you to manage your cognitive reserves on your terms.

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Thank you all for your input and words of advice and encouragement.  I will discuss this further with myself (hey...admit it!  I'm not the only one with a continual mental conversation going on with myself! lol). and see what I come up with, in the mean time, I am taking some practical steps to get things in order for a solid application for disability.  I used to be a paralegal, so when my brain is functioning (5% of the time), I know how to jump through hoops and add information where it might be important.  I may have to ask some questions of you all (OMG...REALLY?!? I just said that, I really did move to the Mid-West!) in the process. Like, and here is the big one....is a lawyer necessary from the get go? or just wait for the first denial and get one then?

 

On the definition of disability and re-defining of myself as a mom, as a woman, and as a person....well, the conversation in my head continues....

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Tarina

Having a conversation with your self is fine but the minute you start having a conservation or arguing with your self in front of others  its time to go see a shrink :insane:

As far as getting a lawyer for your SSDI........... If you fill out all the paperwork honestly and correctly with multiple  Dr's evaluations and you are disabled you will be fine but there are those that don't because there not disabled, they are lazy, don't want to work and get paid watching reruns of Jerry Springier.

On a side note hope I don't pis anyone off but Lawyers are bottom feeders worthless in my opinion but there a necessary evil in today's world. 

 

Ed

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Love the emoji...lol

Nope. Having an argument with myself out loud in front of others hasn't happened yet.  I've just always been an introspective, connected and reflective person. So I have always had ongoing debates and conversations with myself about everything from the origins of words in the English language and what makes Cheez Wiz-cheese, to the symmetry of the universe.

Thank you for the answer to the application question.  I will need to see more doctors it looks like, and probably pay for them out of pocket 😞 .  My first neurology appointment is this week, so all I have is hospital records at this point.

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Steve told me to start because it takes time, went to SSDI and got a packet from them on what they wanted.

Had my GP Dr fill it out

Had my Neurologist fill it out

Had my eye Dr fill it out

Had my PT Dr fill it out

I was approved in 6 weeks and all without a lawyer  :happy:

Good luck and message me if you have any other questions

Ed

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I had a hard time with this too. But I was in a wheelchair, and could not return to my job for several stroke-related reasons, so I had to at least acknowledge the fact that I was not the same as I was pre-stroke.

SSI defines "disablity" as an "inability to work". They will look at your application, and decide if you could return to your former employment,

If they agree with you that you could not, they will see if you would qualify for another job somewhere else, doing something else. If they can't, they will say that you are unable to work, and eligible for Disability. They are only looking at your ability to work.

The average person is going to look at whether you have full use of your arms and legs and if you are cognitively challenged. If all body parts seem to be working OK, then you're"normal", if not, then you are "handicapped". I now see myself as handicapped, because all 4 of my limbs are not fully functional.  Becky 

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>> is a lawyer necessary from the get go? or just wait for the first denial and get one then?

 

My experience was that we sent in the application, and the insurance company declined the permanent disability on very dubious grounds.  I was all set to go the legal route, but my wife just contacted all the medics that I had seen (family doc, neurologist, stroke neurologist, radiologist, cognitive psychologist, neuro-optometrist, MTO) and sent in all of their reports.  Insurance then decided that they I was actually disabled and paid out.

 

They wanted a whole pile of updates after year 1, now just ask for a "nothing has changed" from the various medics.

 

Apart from anything else there was enough in the original documentation (and the stuff after year 1) that they could see that they would lose any sort of legal battle.

 

So my advice would be to keep lawyers out of it for now, just bombard them with overwhelming evidence of your disability.  If they want more, send it.  Only bring in the lawyers when yo've exhausted all other battles -- apart from anything else, they'll cost you money one way or another *and* the insurers have more and more experienced lawyers than you.

 

Good luck!

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Thank you for the advice.  I think what I am worried about is my ability to organize all the information.  Like I said before, I KNOW what to do....I used to be a paralegal after all. But being able to actually do it is something else.  I tired to make two copies of a two page document and organize them into piles to file....it took...i don't remember how long...with so many mistakes, running blank sheets of paper...trying to stack things and making sure I had one of each sheet (mind you ..2 freaking pages!) in each stack (only 3 stacks!), it was a very defeating moment.  

I do have a friend, who used to work with me who might be able to help.  And I know she would love to if she can find the time...

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yes if you aren't feeling confident at managing it yourself find someone to help after all you don't want to lose the option because to apply you need to be able to "work" and the whole point is you can't work. If your friend can't do it look for an advocate rather than a lawyer. you can't be the only one in your situation.

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Sorry I never did answer your question

I can only speak for my self and with a tear in my eye I am disabled trying to survive day to day

Never give up

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Hi Tarina

Yes, struggling with the dreaded D word...

Took me probably two years to accept that Disabled is now a big part of who I am. 

It's a badge I didn't want to wear, but now I wear with pride.

I take disability issues seriously and write to politicians constantly about improving accessibility etc.

 

Apply for your disability payment,  you are entitled. 

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Is there something like "March of Dimes" nearby where you can find some assistance?  I have never needed to use outside help (my wife is super-organized), but there have to be public service groups around who can help you.  You could even try sometime like a local old-age home (they'll be used to sorting out paperwork for people who are overwhelmed) or a school

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I ask myself this often. I told the doc I was broken once, she corrected me that I am injured. Being disabled is a state of mind to me. Sure, I could get a hang tag and park in the blue spot but there are people out there who have injuries that make those few extra steps worse for them than me. I'm able to work so don't try to collect disability. It isn't always easy and everyone tells me I should including my docs but at the same time approve of my still working to stay active.

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I sorta feel this way too. I can not go back to what i used to do. I am looking forward to what maybe I can do, at home, domestically for myself, to help others, to "do" what I can and to feel self respect, dignity, and accomplished. All in the realms of "disability" or "different ability" however you feel right about any such statement. Legally, my state says I am disabled. Personally, I can tell you what I can't do anymore, how I am affected after my stroke on a daily basis, what interferes with me doing more than I do now, what interferes with what I did before. For the past 3.5 years I have fought disability rulings. I am extremely easily distracted, have short term memory loss, feel drunk a lot, have ongoing and really bad neuro fatigue, have ataxia, have cerebellar cognitive affective syndrome, have extreme trouble with night vision and balance, every night my deficits increase until the sun is up the next day, I have severe anxiety with severe frequent panic attacks, chronic headache, anomic aphasia, have flooding overstimulation (auditory, visual, and even smells) and manifests as PBA (pseudobulbar affect), chronic hard to treat depression, visual disturbances, finger manipulation issues, body manipulation issues, hyper reflexes, sometimes visual and auditory hallucinations, I had ADD before stroke and now it is ADD on steroids, anti social (complete opposite before stroke), and several other things not related to my stroke. I have had no income since my stroke (my company closed all stores in Nashville 3 weeks before my stroke so I was not working at the time...I was taking a 2 month hiatus lol that didn't last long). I live with my dad and stepmom, have a kitty, anything I owned prior to my stroke is in storage which my mom pays, she pays for my medication (which is a lot), I get EBT, my Physicians group is part of the hospital I use and after qualifying for financial assistance I have help with my ongoing medical bills (forever blessed and thankful), my sister have me her 2nd car that she does not use and pays for insurance (again so blessed and thankful), all in all I have been super blessed and am so grateful for those around me. However, not being able to financially contribute to my life has been very mentally difficult...taxing for myself and my family. I agree with others who respond with do what you can, keep pushing to improve and make use of what you may can get to help (you paid into this help) and I desperately needed it. After 3.5 years and lots of struggle financially, physically and emotionally I won my SSDI. I just received a medical insurance care last week. I haven't had medical insurance in over 2 years. I may have the opportunity to move into a place of my own (pretty sure I will have the opportunity it just may take a little while...oh I'm patient). I am about to get better medical treatment for the CCAS that I could not have before. Yes I have a blue plaque. Yes I need help with some things. Some things no one can help at the time they just are. I CAN do a lot of things...I am learning to appreciate and fI'd value in those more and more. I know I have fallen short in areas of my life after stroke. I am determined to not let that truth define me. I can do some things better today than I did 4 years ago. Like really love me, love nature, love family, love responsibilities (though limited I am glad I can have some), value the little things, heck even see the little things, I can use a planner like I have never been able to lol (ok so out of necessity but that is amazing to me), I put less value in material things and more value in things of the heart and soul. I could go on and on. So I am abled. Limited but abled. The word "disability" makes me no less than who I am. BTW getting approved for disability is not an easy process for some (even if you are blatantly honest and have multiple doctors). There is no shame in legal help. Starting at thethe 1st appeal I had legal help and I do notuse feel guilty at all...I have nothing to feel guilty for. I know this was long...my apologies and best of wishes no matter where you are 🙂.

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Today....I definitely feel DISABLED.  Why are some days so much harder than others?  I wore myself out the last week and pushed myself on Saturday, and have been basically dysfunctional for the last two days. I took my final exam for one of my classes last week. BTW, I got an 80%!!!!!! I was so happy, but this is one of those "fluff" classes that they make you take where your opinion and personal growth matter.  I saw the neurologist for the first time- which went ok...I guess. Despite all the phone calls, no one seems to have sent my hospital records to the new neuro, so they weren't able to tell me much. And I went and applied for some assistance from the state- which I found out today, I was rejected for, but still don't know why.  Then Saturday, it was finally sunny and somewhat warm and i just wanted to take my kids to the park.  I would never think of driving in my condition, especially not with my kids in the car, and the park is close....I used to walk there all the time.  In fact, pre-stroke, I rarely used my car in town, just walked everywhere.  Well, I made it there....cried while my children played..because I knew I was so worn out.  Rested and tried to make it home, and ended up sobbing and not making it.  I had my daughter run and get a neighbor who came and got me in a car.  I miss being a mom that can cook for her kids, and take them to the park, and be part of their lives in a meaningful way.  My sons birthday present is still sitting there, because he needs someone who can help him put a robot together, and I can't read it or figure it out, and my left hand is not functional enough to manipulate the pieces.  They have been at school all day, and I can't seem to manage folding a load of clothes or doing dishes, I'm just to damn tired!  I'm capable of sitting in the sun that is coming through the glass door, closing my eyes and soaking in the warmth and occasionally typing on the computer....and that's it.  So today, yes, today I am disabled......

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Oh Tarina...big hugs for you.

 

Congratulations on your exam score!

 

Overdoing it does come with a big price, physically and mentally.

 

We need these overdoing it episodes to figure out how much is too much, and what amount is just right.

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Tarina

 

I feel for you.  It is really horrible to run out of steam and stop functioning properly, to have to depend on children to do things for you that you should do for them.  Hugs.

 

The flip-side is that it gives the kids a sense of control to be able to help, makes your stroke less frightening because they can do something, and empowers them for their lives in general.

 

But it really does suck.

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Tarina I really understand...it sucks but it is something (fatigue) all too common after stroke. It's different than not getting enough rest. It shuts your brain down. 😥 Neurofatigue is your brain saying slow down and it's weird but it can completely disrupt your life. I know most people say "I don't have time for this fatigue.". I promise you your brain won't let you just ignore it. I wish we could. Today I had one of those days for me. I was just approved for disability with a little SSI. So I am on Medicaid/Tenncare until Medicare starts. Anyways, Medicaid is really hard to figure out and I realized today Medicare is even harder especially when you have a slew of meds. My mom was insisting I get a certain answer for her and well I ended up in a panic attack just trying. That took all my spoons for the day (spoon theory). Some days I can accomplish many of my plans some days I can accomplish 0. I hate this. I'm sorry for your rough day...I hope you are feeling better and tomorrow will be another day. Rest, sleep, keep away from stress, take it easy the next day. Over time you will be able to recognize better which things zap you more. You'll learn more which things are doable within an amount of time or period and you'll better gauge how each day may affect you different. You can plan better, ask for help when needed, and can anticipate fatigue better. Try not to ignore it. It usually does not get better on it's on if you do. Your brain is working harder than it used to doing the same things. That fatigue is your body giving you heads up. For many survivors Tarina this fatigue gets a lot better and even if it shows up sometimes you can have more control in the situation. I wish you the best...vent/share whenever you need. Happy Holidays. 🙂

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Too much noise, visual stimulation, etc will put me into a state of neurofatigue like Tracy said. Once there I am good for sitting and staring off into space with an empty gaze and no thought process going on. Sort of like being asleep but my eyes are open. Freaks my wife out when that happens. She just puts me to bed.

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I have a question for everyone and need a truthful answer  :blushing: 

I feel I have let down my family especially my kids as I can no longer do things like I once did, how do you cope with that............ I feel like a looser and my son made a comment that I was a quitter...............that is killing me inside  :sorry:

I have tried for the last year and a half but am slowly loosing my patience and just feel like crawling under a rock   :terrified:

I went from being the Shell answer man, that guy that  could fix anything to the disabled gimp that hits the wall of fatigue if the wind blows.

Tarina........I am sorry for looking like I took away your post, that was never my intentions. Like I said before I can only comment on life after my stroke.

I am disabled  :ashamed: 

Ed

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