Disabled seems to have some new meaning!

[suanna]

I am amazed at how many young, seemingly healthy 20somethings come in with medicare for insurance, since they have SSDI-completely disabled. From what I've seen with my friends and family, getting approved for disability is about as likely as winning the lottery on the way to pick up your Nobel Prize. Any tips? My bones are killing me. I can barely walk to my car after a 12hr shift. My personal med list is longer than any patient I've taken care of in the last year. What is the magic that gets these people approved? I'm not criticizing them, I'm envious. At the rate I'm going, my only hope it to end up in a permanently vegetative state long enough to draw my pension. Even then, I bet the government will declare my decomposing as proof that I am capability of gainful employment-as a flower pot.

[LadyFree28, BSN, LPN, RN]

Perhaps someone bought her those sneakers. Perhaps the purse was a gift, a hand-me-down. a knock off. You don't know how that person came to acquire those things, nor is it any of your business. Perhaps you'd be happier if these people were in sackcloth and ashes, lying in the gutter with outstretched arms, crying, "Alms for the poor! Alms for the poor!"

Some want us to live like a century ago, like in Upton Sinclair's "The Jungle"

[OCNRN63, RN]

​I am done with this thread. I am angry to the point of tears, and I don't need that in my life.

[OCNRN63, RN]

Some want us to live like a century ago, like in Upton Sinclair's "The Jungle"

​You got it. I'll be happy to trade someone my cush disability life for their working life. They can get a taste of what it's like to live the way I do, all day, all night.

[duskyjewel]

You know I have nothing but respect for you, but I strongly disagree.

And I for you, and people who respect each other can and do disagree. I'm sure we will again. But I also think all of us probably agree on more.

[Cricket183, BSN, RN]

I have been on disability now for 6 1/2 years. I HATE IT! I am only 46 and the thought of this potentially being the rest of my life scares and depresses me. I worked hard for my nursing degree and took great pride in my career. It didn't come easy. I married young and had my children young. (Married at 20 and had my boys at 21 & 23. My choice and I don't regret for one second.) But it did make getting my BSN a challenge. I took night classes to get my prerequisites finished while running a home-based business for 10 years so I could be home with my kids. Again my choice. When I finally got the opportunity to go to nursing school full time, it took many sacrifices on the part of my whole family. The closest nursing school was 90 miles away from where we lived. When I graduated, that diploma belonged not only to me but to my husband and sons as well. I worked as an oncology nurse and loved it passionately.

Then RSD/CRPS entered my life. Even though I was a nurse I had never heard of this disease. It's a neurological condition that causes severe burning pain, swelling, temperature and color changes, muscle spasms and dystonia, allodynia and hyperalgesia to the affected area(s). It started in my neck, right arm and shoulder. I forced myself to continue working for about 18 months after diagnosis. I learned to do most things left handed because my right arm (dominant hand) suddenly didn't want to cooperate. It was swollen and ice cold yet felt like it was on fire. Even clothing caused pain that would bring me to my knees and if I accidentally hit on something (which was easy to do since my muscle control was affected), it brought pain so severe that I would sometimes vomit and on a few occasions passed out. The RSD/CRPS eventually spread to my left shoulder & arm, chest wall & rib cage, and my spine. It also affects my stomach (gastroparesis) and heart (SVT and sinus tach) due to the way RSD/CRPS affects the autonomic nervous system. Most days by looking at me, you would not know I have a disability, unless I happen to be in a particularly bad flare in which I am swollen or my skin is either bright red or a dusky purple. Luckily that happens rarely these days but when I was first diagnosed it was common.

Being on disability sucks! For the first 5 1/2 years of being on disability, I spent most of my time in my recliner trying to do anything I could to keep my mind occupied. I went from being a very busy minister's wife, mom of two teenage boys, and a nurse to not being able to do the simplest thing like housework, drive, or even wash my own hair. I had limited use of my arms so doing crafts or even sometimes holding a book or typing on the computer was just too much. Plus I was on a heavy dose of daily narcotics and antiepileptics to try and ease the pain. Truthfully all they really did was make me not care. I was still in excruciating pain 24/7. I tried (and failed) almost every treatment out there.

Luckily, this past December we found a treatment that is finally working. I have high dose ketamine infusions for four days every 4-6 weeks. I have regained almost 100% function of my arms by doing Aqua Therapy and warm water aerobics 3-5 days a week. My pain, while still there, is much more manageable. I am off the high-dose daily narcotics. Trigger point injections and Baclofen control the dystonia and muscle spasms. It has taken/takes a lot of hard work to regain what was lost. My goal is to be off disability and return to nursing within the next 1-2 years.

I share this only to point out that you truly never know what it is like to have a disability until you have been there. The physical aspects may or may not be obvious. I am real good at putting on a happy face and pretending to be ok while suffering in excruciating pain. What it does to your spiritual and emotional well being cannot be seen. I went (and still go) through the whole grief process. There are times I get so angry. This is not the life I envisioned. I feel useless, although less so as I have regained function and am able to do more. I feel like a burden to my husband, although he assures me I am not. I missed out on things with my boys (sporting events and musical performances, etc.) and other family events. My first grand baby (a girl!) is due in 6 weeks and I am determined not to miss out on that!

I know there are people who abuse the system, but I feel they are few and far between. I suspect that the majority of people on disability are like me. They absolutely hate it and would give almost anything to be able to work and feel like a productive member of society again.

[NurseGirl525, ASN, RN]

​I am done with this thread. I am angry to the point of tears, and I don't need that in my life.

This is just ridiculous that there is no more compassion from people who are supposed to be nurses. I am angry also. I'm in my second week of fundamentals and one of the things my instructor is stressing is it is not your job to judge anyone, period. And to the OP, yes my comment was directed at you. You are envious at what seems to be our ability to "work" the system and get approved. Like I stated, it took me over 3 years of paperwork, calling doctors, pulling my own records, and jumping through hoops. Then I had a hearing with a judge who was so mean, I was in tears during the hearing. I had to sit there and explain why I had stopped working 5 years previous and how all of my hospitalizations after my son was born caused me to not be able to go to work again. About how I struggled trying to go to work all of those with epilepsy and what changed. Why could I work in 2002 and not in 2010 with my disabilities. She was accusatory and mean. I had already mourned for years the complete loss of my life beforehand. Where I was healthy and pain free. It is a grieving process. Plus I had an abusive husband who could in no way, shape, or form understand what I was going through. His attitude made everything worse. According to him, I was a lazy, no good woman, who sucked at what he considered my role in our life. My job was to be his maid. I certainly hope you are never, ever, in the position I was because I wouldn't wish it on my worst enemy. My hope for you is to learning compassion and to not be so judgmental of people you don't know.

[RNsRWe, ASN, RN]

I'm not trying to be confrontational, just educational, so please excuse me if the tone of my post does not come through correctly.

ADD and ADHD are not mild diagnoses. Some are mild cases. Some are not. And medication does not work for all of the sufferers.

Imagine, if you will, simply getting ready for your hospital shift from the ADD/ADHD perspective.

First, your alarm goes off and you wake up groggy because your brain wouldn't shut up long enough for you to fall asleep until six hours ago. You also had an incredibly real dream about forgetting you had four patients instead of two, so not only are you groggy, you are extremely anxious.

You get up and start your morning routine. Shower, check. Clean underwear, check. Deodorant, check. So far, so good.

Until it's time to make breakfast. You can't remember what you have available, so you stand in front of the fridge and open every cabinet. Then you notice you left some stuff on the counter last night and go to put it up. Your husband is up watching the morning news, you hear it playing and walk over to check it out, then promptly get sucked in to watching the TV until a commercial break. Luckily, the commercial is about food, so you remember you are getting breakfast. You head back to the kitchen, trip over toys on the floor, then grab them and put them away. As you pass the door to the bathroom, you realize you have to go again, so you do. As you get ready to leave the bathroom, you notice the toilet isn't as clean as you'd like, so you clean it really quickly.

At this point, your second alarm, the one that tells you to get dressed because you have 15 minutes to get out the door or you'll be late, goes off.

You run back to the bedroom, throw on your scrubs, and run to the back door. You run over your mental checklist. "Keys, wallet, bag, lunch, stethoscope, hemostat, scissors, pens…" Keys first. Where are the keys? OMG, WHERE ARE THE KEYS!?! Apparently, you forgot to hang them up in their assigned spot by the door.

After you have spent ten minutes over the fifteen you had allotted yourself to get out the door, just looking for the stupid car keys, you yell for help, and your husband finds your keys stuck in your jacket pocket from two days ago. Relieved to have the car keys, you run out the door and jump in the car, then zoom out on to the road, in a tizzy because now you are LATE. Nothing else on your mental list makes it into the car with you.

Halfway there, you realize your badge is still sitting on the nightstand, right where you took it off after last shift. You frantically yank out your cell phone, which was one of the things you had left out on the kitchen counter, and call your husband. Luckily he doesn't have to be at work for a couple more hours. Distracted by the phone, you miss your exit and have to turn around.

Your husband is also wonderful enough to notice that your stethoscope, wallet, and assorted pocket stuff is still laying out on the nightstand, so he grabs all of that in addition to your badge. When he gets to the hospital, only a couple of minutes behind you, he doesn't even yell at you for leaving the cabinet doors open, leaving the cleaning supplies out in the bathroom, and leaving the milk out on the counter (because you thought cereal might be a good idea until you checked the cabinets and there wasn't any because you forgot it at the store).

And you haven't even gotten in the door of the hospital yet.

Add in kids and pets and it gets even harder for the ADD/ADHD'er to function.

It is very hard for someone with debilitating ADD/ADHD to get disability, mainly because of the way the system is set up and because so many believe in the myth that these are not "real" diagnoses. If people with these actually get disability, it is because someone in their family or social network helped them, because there is no way they would be able to navigate the system on their own. They would miss some deadlines, mislay some paperwork, fill out the papers the wrong way, etc, etc.

While this scenario is slightly exaggerated to make my point, it really isn't that far off from what someone with ADD/ADHD experiences.

Wow.

Well thought out, well presented, and clearly educational for me. I suppose because I do see so many who can and do function perfectly well (while on meds) that it's difficult to see how it COULDN'T be managed. Your scenario brings it home for me, and I thank you for that.

My own experiences are seen through friends and family who have this dx. They take meds, they go to work, raise their kids, clean up after their pets, and do whatever anyone else needs to do.....and I'm close enough with them to know if they AREN'T managing just fine. They are. If they DIDN'T take their meds? Well, different story. They'd most likely be as you described. BUT they DO take the prescribed meds.....and function. My statements haven't been made of ignorance, but of what I have seen for myself. For some it may be completely debilitating, I can see this now. But for many? Correctable.

I do want to offer my apologies to those I most likely offended....seems I stepped in it here. My own experiences have colored how I view "the big picture"; I personally HAVE seen abuses that would make you (collective "you") cringe. It might just be a small percentage who demonstrate this abuse of the system, but it's likely the most visible sector, so.....errors and broad brush strokes are made.

Again, my apologies. It's a tough topic to discuss no matter what position you take, I think.

[imintrouble, BSN, RN]

There are people who cheat every single social program imaginable.

From food banks to food stamps.

From unemployment to disability.

Every single one of us has witnessed it in some way.

Hopefully none of us will try to deny it occurs.

Just as there are cheaters/users, there are those who have to have it to survive. Two completely different segments of our population receiving the same services. Why do we have to legitimize the cheaters, in order to avoid making the decent people feel guilty?

Should we just give every single able bodied person who says they can't work because of their whoknows itis, a check? Not caring if they're legitimate or not? After all, we can't judge can we?

If everybody gets everything, there will be nothing left for any of us.

I have a family member who receives disability checks every month to live.

Nothing anybody has posted here has offended me because they're not talking about me or mine. I understand the differences they have repeatedly tried to explain. Tried to explain ad nauseum, in an effort to smooth hurt feelings and ruffled feathers.

[canigraduate]

Wow.

Well thought out, well presented, and clearly educational for me. I suppose because I do see so many who can and do function perfectly well (while on meds) that it's difficult to see how it COULDN'T be managed. Your scenario brings it home for me, and I thank you for that.

My own experiences are seen through friends and family who have this dx. They take meds, they go to work, raise their kids, clean up after their pets, and do whatever anyone else needs to do.....and I'm close enough with them to know if they AREN'T managing just fine. They are. If they DIDN'T take their meds? Well, different story. They'd most likely be as you described. BUT they DO take the prescribed meds.....and function. My statements haven't been made of ignorance, but of what I have seen for myself. For some it may be completely debilitating, I can see this now. But for many? Correctable.

I do want to offer my apologies to those I most likely offended....seems I stepped in it here. My own experiences have colored how I view "the big picture"; I personally HAVE seen abuses that would make you (collective "you") cringe. It might just be a small percentage who demonstrate this abuse of the system, but it's likely the most visible sector, so.....errors and broad brush strokes are made.

Again, my apologies. It's a tough topic to discuss no matter what position you take, I think.

Thank you. Your very nice apology is accepted.

[catmom1, BSN, RN]

My mental picture of this made me literally "lol". May just be me...but what in the world is a "service cat"??

I am trying to picture exactly what "services" a cat could provide to someone other than companionship. I've never seen a cat on a leash leading someone or anything else that I'm aware service dogs usually do. Admittedly, I'm not a cat person and have little knowledge of the animal service industry, but I'm just baffled.

Anyone care to enlighten me?

I hope I am not derailing this thread by wondering this myself. I saw ICURN3020's question and thought it might be a joke. Then I saw that a previous poster was serious that there are "service cats."

Now, I know cats can be trained for movie work, etc but having had cats (i.e. having been the servant of cats, lol) all my life, I can't imagine what they could be trained to do for me as a service.

Does anyone have any ideas on this?

I will say that they are excellent at reminding me on what they want me to do for them!

Catmom :paw:

[duskyjewel]

Apparently cats can alert owners to oncoming seizures.

http://animals.accesspress.org/2011/06/03/service-cats-feline-fur-balls-save-lives/

[Esme12, ASN, BSN, RN]

There but for the Grace of God go I.........

I had a friend post on FB showing a person in a wheelchair stand to get something off of a shelf and made a comment about "being disabled....yeah right...just lazy. " I reminded her that I too use and electric chair even though I can stand and walk about 2 feet before I fall. That I too can get out briefly to get something off of a shelf. I too have a coach purse, two of then actually, that I bought before I was struck with this hellish disease that has robbed me, and my family, of their Mommy and wife. I lived within my means...we have a nice house. I have nice things....before I became ill. I had a more than a year of living expenses saved....I had a decent 401K.... all gone now.

Now everyday is a struggle. There are days I can't comb my hair or brush my teeth because I can't use my arms that well or raise them enough to brush my hair. To see me I'm a fat lazy slob....I have Cushings from meds. I have had complete strangers walk up to me and suggest that I needed to get out of the wheelchair and exercise...or to get a job. My children have seen the ugly side of humanity and it outrages them.

SO before you judge someone remember....

There but for the Grace of God go I.........