Thursday, April 14, 2011


I joined a forum to learn more about Trigeminal Neuralgia after my recent diagnosis and I have been reading a lot of stories from Americans with this disorder... and wow, the stories about how long it takes to get social security disability are mind boggling. The general consensus is that you have to be out of work for at least 6 months before you can even apply, and then that process has taken up to 2 years before they are approved.

Now, I know a lot of people do not like these entitlement programs in the first place, but they are in place and people are paying through the nostrils in various taxes to fund them. And then they cannot get them without fighting tooth and nail sometimes. TN hits older people for the most part, I would be considered a rarer case because I am under 50/60 - so basically that means most of the people with TN have already worked and paid into the tax system by force for 20-30 years and then suddenly they need it - and they have to jump through hoops, pay lawyers, be out of work for 6-30 months, etc before receiving a dime of it back.

What is wrong with this picture,eh?

People in the forums who are newly diagnosed or are really starting to hit the bad stages of constant intense pain are now sitting around hoping that they can work their butts off to save up enough money to carry them through the long waiting period for receiving SS disability benefits. That just seems wrong. If we are all forced to pay for such programs, and taxes are increased more and more over time to keep up, then why is it so hard for the very people who have been paying into their forced retirement programs unable to get the money if they are forced to retire early due to medical reasons? The whole system is busted from top to bottom and it becomes more apparent all the time.

Meanwhile, there are multitudes of govt workers being paid to sort through, approve (or deny), claims, multitudes at the top who sit around making other decisions, those who are paid to keep an eye on the program, those paid to collect our taxes and pass the money along, etc etc who are PAID WITH that same tax money, and then get to retire with a pension also paid for with that same tax money - while others are waiting years to get a tiny piece of it. Waiting in pain and torture, getting fired because they have taken way too many sick days and the boss just cannot carry that load anymore either, or working despite being in dire pain most of every single day - and then finally, maybe, one day getting their disability checks.

This goes for all sorts of ailments of course, not just TN. What a crappy horrible system so many people seem to be supporting and wanting to remain. It needs a serious overhaul if it's going to actually do anyone any good. How much of that tax payer money (taxes, SS deductions from paychecks, etc) gets wasted in that 6 month to 2.5 year waiting period that could instead be going to the person who needs it? In this economy, how can normal regular average people go for that long with NO income?

Many would say you need a nest egg. Start saving right from age 16 when you start working so that one day if you need it, it's there. Yes, that is true. But then you come to those who are a lot younger when diagnosed with TN - like the 18 yr old I met online today. Or the 30 year old. Trusting that their stories are true, they are already struck so hard by TN, they can barely function to get out of bed in the morning without dropping to the floor in pain, let alone going to work to make some money to support their family. Those people have not had enough time to save up but they HAVE been paying into the insurance programs for every day, week, month, year that they have worked - and yet, they have to wait what seems to be extortionate amounts of time to get anything.

Just think if you bought a car, paid your insurance faithfully every month, and then an uninsured person crashed into you and you called your own insurance company and they said you had to go without your car for 6 months before you could apply to get some money, and then after 6 months you had to wait another 2 years before you could actually GET the money to fix your car or buy a replacement for a write-off. That would have everyone up in arms freaking out in 5 seconds flat. So now think about being FORCED to pay SS contributions and taxes, rather like an insurance program based on your ability to work, and then you cannot get it for eons. If you would be angry about car insurance taking 2.5 years to kick in, something that is taken out on a possession, something that you do not actually NEED to survive, then why not be ticked right off angry about those who cannot get disability after being forced to pay into the program for X number of years? You should be MORE angry for those people, or for yourself if you are in such a position.

It's just not working. Plain and simple. What could possibly take 2 years to work through? A specialist signs a note stating that your pain levels have exceeded any medication amount that is deemed a safe level by the federal drug agency, that your pain is crippling to the point that you are unable to work, maybe even a second specialist and your GP sign one as well. Your employer signs one stating how many days you have had off sick or for surgeries and recovery time. And tada - you send it in. Someone checks that it is official, maybe faxes the specialist to find out if they are a real person or whatever they need to do. And then out comes the red APPROVED (or denied) stamp. tip tap on some computer keys and tada - your check will be printed off and sent in the mail. All done.

Does that take 2 years? I mean, seriously, come on. Yes there are people out there who scam the system and they cause a big pain in the arse - but funnily enough, those are the ones who seem to get their money lickety split. Why is that? The system is broken. It's broken in Canada too but my gosh I was completely shocked to read how long it can take in the US, and how long you have to be out of work before even applying in the first place. With all the bickering going on down there over cuts here and no-cuts there, all I can think about is their terribly draining busted systems like Medicare/Medicaid/SS Disability and so on, and how much money would be saved by sorting that crap out. But my only conclusion is that they (govt) DO NOT WANT to fix it. What other reason could there possibly be to let things go on like that? They must not want to fix it, they must want people to rely on them more and more. Do those waiting for disability get to apply for welfare? I have no idea, I haven't seen that yet, but if they did then that's more people for the govt to say 'see, we have XX number of people living below the poverty level so we need to increase taxes on The Rich to pay for it'. Well how about fricken get your thumbs out of your hineys and do something about the current state of affairs that does not involve forcing people to rely on more aide? How about fixing the severely broken aspects and realizing you suddenly freed up billions of wasted dollars, and get it back to the people who have faithfully paid their dues all these years, so they can hold their head up high again and get on with life instead of hating themselves while they become yet another pariah, another statistic for govt fat cat officials to wave around during speeches. That sounds like a better plan to me.


  1. My mom suffered terribly with TN. For those who have never seen the results of that level of pain, I can assure all that it totally debilitates.

    After years of using drugs to keep it at bay, and putting up with the awful side effects, she had the surgery.

    It has been better than 5 years now, and while a few reminders come and go lately, she is fully functional and pain-free.

    Please find that specialist surgeon in your area, who can help you, since you are so young, and can go back to a regular life without that horrible, horrible pain.

    This surgeon was in Alberta.

    There are support groups who can help direct you to where others will be. Do not give up on getting your life back. Best wishes.

  2. Thanks! I am sorry your mother had to go through all this! I am in the early stages, still have to get some more tests to find out if they can see where the problem is, or if they would have to do an exploratory surgery to find where the nerve is being compressed or if there are lesions... etc etc. I might have a secondary form that deals with my neck and ear too so that's not fun. That would be the 9th and/or 10th cranial nerve along with the 5th (for TN).

    I wish your mom continued recovery and painfree days :) :) It's always good to hear happier stories!



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