Aa
How many of you do NOT work anymore
My situation began, when I went on my yearly vacation, the last week of June-first week of July, 2009
On July 3rd, I fell off my deck, which resulted in a "closed head injury" (severe concussion), severe neck trauma, severe chest contusion, and a severely dislocated left thumb. I was in the hospital July 3-6.
This brought about a catastrophic chain of events, because I was unable to return to work.
Through Physical Therapy, Occupational Therapy, Speech Therapy, and a close eye by an RN, it was attempted to get me back to physically and mentally be able to return to work.
August 17th, 2009, I went to see a Neurologist, who ordered an MRI & EEG
August 18th, 2009, EEG performed
August 19th, 2009, MRI performed
August 27th, 2009, the Neurologist revealed that the EEG (for seizures) was normal, (shows the MRI to my wife) and that the MRI revealed two things, a "walnut-sized cyst" in the middle of my brain, and 12-16 lesions spread throughout my brain. He told my wife, this probably meant MS (Multiple Sclerosis). He also said, to return in two months, but also he could not release me to return to work.
October 19th, 2009, the Neurologist said very little, except to return again in another two months, and he could still not release me to return to work.
November 16th, 2009, 2nd MRI performed
November 17th, 2009, the Neurologists looks at 2nd MRI, (he doesn't show either one of us the MRI), he states that it shows more cysts (but he fails to say how may), and that is shows more lesions (again he doesn't say how many). He orders an LP (Lumbar Puncture or Spinal Tap), VEP (checker board) test, and blood work.
November 19th, 2009, LP (Lumbar Puncture or Spinal Tap), VEP test, and blood work are performed.
Neurologist leaves town (actually country) until December 7th, 2009
December 22nd, 2009, After not hearing back from my Neurologist, since his return, my wife calls his office.
The Nurse confirms that the tests (LP, blood work) confirm MS (Multiple Sclerosis), and asks what current MS medicine I was taking? My wife let them know, I wasn't on any MS medicine because we were waiting on the confirmation of his diagnosis. Well, she said we can get him started on Rebif, and it will be of little or no cost to you.
January 14th, 2010, I took my first (8.8 mcg) dose of Rebif.
My job finally released me from their employment on December 1st, 2009, because I failed to return.
I have not received any income since October (that was a blessing because people who had sick leave could give it to someone who needed it, at least for a certain length of time, and mine ran out at the end of October 2009.
This also means I lost my health insurance and prescription plan.
My Neurologist, has told me many things, most importantly I cannot drive a car again, and I will not be able to work again. He also said his office would help me with the SSI & SSD paperwork for Social Security.
No work means, no money and no insurance, that's real bad!
Well, I can (and have) applied for Social Security Disability, but that can take, at least, 5 months to process.
I can (and did) apply for SSI, and was denied because my wife (who is also on SSD) makes $800, too much money.
I applied for SRS assistance, thinking they could help me "bridge the gap" until I get SSD.
Well they gave me $100 per month for food assistance.
I had a pension plan, and I had two possible ways to use it.
1. Since I was discharged for a disability I could receive $600 a month for the rest of my life, which would have nothing to do with getting Social Security Disability (I could receive both).
2. Take a lump sum, minus taxes & penalties, of about $6,500. The catch is, you have to spend $3,500 immediately, and you can keep a balance of $3,000, this would allow me to qualify for SSI.
I'm broke, NOW.
Which means, I could lose my home, my (only) car, etc. while I'm waiting around to qualify for SSD.
They just don't understand (nor care) how do you financially make it, until they agree to give you, what they themselves call "automatic" (if you become disabled due to MS, it is one of the "automatic" causes to be approved).
My wife cannot work, she is already on SSD, and gets only $800/month.
My car payment is $400, my house payment is $340, and my lot rent is $220
Just those 3 bills alone add up to $960.
That does not include: utilities, phone, gasoline, groceries, Internet, misc., etc.
All these other bills, must be paid, or you lose them, they shut them off, etc.
Without all the other things to deal with, just making it through the day, with all my MS symptoms
I have to try to deal with the stress of losing everything!
Believe it or not, I'm really not depressed, and I'm not even close to saying "death looks pretty good right now"
I do not, and never have asked God, for more money than I need, I don't want to be rich, I just want enough money
that I don't have to worry if I'm going to have the money to pay my bills.
Q? How many of you, do NOT work anymore?
Q? How did you make it, until things settled down, and you didn't have to worry about money to survive, so you could concentrate on dealing with your MS and it's symptoms?
On July 3rd, I fell off my deck, which resulted in a "closed head injury" (severe concussion), severe neck trauma, severe chest contusion, and a severely dislocated left thumb. I was in the hospital July 3-6.
This brought about a catastrophic chain of events, because I was unable to return to work.
Through Physical Therapy, Occupational Therapy, Speech Therapy, and a close eye by an RN, it was attempted to get me back to physically and mentally be able to return to work.
August 17th, 2009, I went to see a Neurologist, who ordered an MRI & EEG
August 18th, 2009, EEG performed
August 19th, 2009, MRI performed
August 27th, 2009, the Neurologist revealed that the EEG (for seizures) was normal, (shows the MRI to my wife) and that the MRI revealed two things, a "walnut-sized cyst" in the middle of my brain, and 12-16 lesions spread throughout my brain. He told my wife, this probably meant MS (Multiple Sclerosis). He also said, to return in two months, but also he could not release me to return to work.
October 19th, 2009, the Neurologist said very little, except to return again in another two months, and he could still not release me to return to work.
November 16th, 2009, 2nd MRI performed
November 17th, 2009, the Neurologists looks at 2nd MRI, (he doesn't show either one of us the MRI), he states that it shows more cysts (but he fails to say how may), and that is shows more lesions (again he doesn't say how many). He orders an LP (Lumbar Puncture or Spinal Tap), VEP (checker board) test, and blood work.
November 19th, 2009, LP (Lumbar Puncture or Spinal Tap), VEP test, and blood work are performed.
Neurologist leaves town (actually country) until December 7th, 2009
December 22nd, 2009, After not hearing back from my Neurologist, since his return, my wife calls his office.
The Nurse confirms that the tests (LP, blood work) confirm MS (Multiple Sclerosis), and asks what current MS medicine I was taking? My wife let them know, I wasn't on any MS medicine because we were waiting on the confirmation of his diagnosis. Well, she said we can get him started on Rebif, and it will be of little or no cost to you.
January 14th, 2010, I took my first (8.8 mcg) dose of Rebif.
My job finally released me from their employment on December 1st, 2009, because I failed to return.
I have not received any income since October (that was a blessing because people who had sick leave could give it to someone who needed it, at least for a certain length of time, and mine ran out at the end of October 2009.
This also means I lost my health insurance and prescription plan.
My Neurologist, has told me many things, most importantly I cannot drive a car again, and I will not be able to work again. He also said his office would help me with the SSI & SSD paperwork for Social Security.
No work means, no money and no insurance, that's real bad!
Well, I can (and have) applied for Social Security Disability, but that can take, at least, 5 months to process.
I can (and did) apply for SSI, and was denied because my wife (who is also on SSD) makes $800, too much money.
I applied for SRS assistance, thinking they could help me "bridge the gap" until I get SSD.
Well they gave me $100 per month for food assistance.
I had a pension plan, and I had two possible ways to use it.
1. Since I was discharged for a disability I could receive $600 a month for the rest of my life, which would have nothing to do with getting Social Security Disability (I could receive both).
2. Take a lump sum, minus taxes & penalties, of about $6,500. The catch is, you have to spend $3,500 immediately, and you can keep a balance of $3,000, this would allow me to qualify for SSI.
I'm broke, NOW.
Which means, I could lose my home, my (only) car, etc. while I'm waiting around to qualify for SSD.
They just don't understand (nor care) how do you financially make it, until they agree to give you, what they themselves call "automatic" (if you become disabled due to MS, it is one of the "automatic" causes to be approved).
My wife cannot work, she is already on SSD, and gets only $800/month.
My car payment is $400, my house payment is $340, and my lot rent is $220
Just those 3 bills alone add up to $960.
That does not include: utilities, phone, gasoline, groceries, Internet, misc., etc.
All these other bills, must be paid, or you lose them, they shut them off, etc.
Without all the other things to deal with, just making it through the day, with all my MS symptoms
I have to try to deal with the stress of losing everything!
Believe it or not, I'm really not depressed, and I'm not even close to saying "death looks pretty good right now"
I do not, and never have asked God, for more money than I need, I don't want to be rich, I just want enough money
that I don't have to worry if I'm going to have the money to pay my bills.
Q? How many of you, do NOT work anymore?
Q? How did you make it, until things settled down, and you didn't have to worry about money to survive, so you could concentrate on dealing with your MS and it's symptoms?
I'm not currently dx'd with MS. my current dx are Fibro, IBS, RLS, PTSD, OA (left knee), Plantar Fasciitis (right foot), and rotator cuff problem-right arm. during the summer of '07, I notice same odd sx that didn't fit my current dx and ignored them. it wasn't until Jan '09, when I could no longer ignore or blame another known condition. Fibro does not cause L'Hermittes or paresthesias (on one side only). in fact fibro does not damage the body at all, it may feel like it at times; but it doesn't.
My PCP doesn't think whats going on now is any of my dx conditions, but neurological in nature. last summer when I was in a major flare (last 10 month total), one of my sx was my right eye. my PCP kept telling me he thinks he'll get the answer threw my eye. he's been my doctor for at least 8 years, so I can read his body language. when he says stuff like this, I can tell he has an idea of what it might be and his eyes were sad. everyone seen this look, the bad news sad eyes look.
I haven't worked since Nov '07, not because of sx (well they were active but not as bad). my boss retired just as the economy collapsed and I couldn't find a job. I applied for SSD in June '08 and I'm still waiting for the hearing to get SSD. to get a hearing you have to be denied 3 times. I'm hoping my PCP can figure out what this new condition is before the hearing. average wait time to find out when the hearing is 500 days.
my ex hasn't paid a dime in child support (2 great loving kids) in years. I have sole custody and he isn't allowed to see them. I went threw my savings and my kids college fund at first while I was fighting the unemployment. I was going to graduate college and the classes I needed were only offered once a year and during the day. I got it, but that money ran out.
So how do I make it? I and my kids are on food stamps, my states health plan, and cash assistants. not much just barely enough to pay the bills, gas for my car (fully paid for), and the basics for around the house. my parents help me with the rent. if they didn't, my family would be living in my car.
My PCP doesn't think whats going on now is any of my dx conditions, but neurological in nature. last summer when I was in a major flare (last 10 month total), one of my sx was my right eye. my PCP kept telling me he thinks he'll get the answer threw my eye. he's been my doctor for at least 8 years, so I can read his body language. when he says stuff like this, I can tell he has an idea of what it might be and his eyes were sad. everyone seen this look, the bad news sad eyes look.
I haven't worked since Nov '07, not because of sx (well they were active but not as bad). my boss retired just as the economy collapsed and I couldn't find a job. I applied for SSD in June '08 and I'm still waiting for the hearing to get SSD. to get a hearing you have to be denied 3 times. I'm hoping my PCP can figure out what this new condition is before the hearing. average wait time to find out when the hearing is 500 days.
my ex hasn't paid a dime in child support (2 great loving kids) in years. I have sole custody and he isn't allowed to see them. I went threw my savings and my kids college fund at first while I was fighting the unemployment. I was going to graduate college and the classes I needed were only offered once a year and during the day. I got it, but that money ran out.
So how do I make it? I and my kids are on food stamps, my states health plan, and cash assistants. not much just barely enough to pay the bills, gas for my car (fully paid for), and the basics for around the house. my parents help me with the rent. if they didn't, my family would be living in my car.
hey marisa,
i too was in the IT world with an international engineering firm, as a systems analyst.
i'm doing simple data entry now for pennies on the dollar in comparison. better than nothing though i honestly can do about 5 hours work and then i need to come home and take a med and chill out.
reinvent? yep, studying and practicing programming microcontrollers so i hope i can do some work from home hobby/biz wise. i'll need the ssd though to survive and the work from home allows to be able to lay down and chill when i need too.
didn't mean to hijack your thread socrates but wanted to share that marisa.
i too was in the IT world with an international engineering firm, as a systems analyst.
i'm doing simple data entry now for pennies on the dollar in comparison. better than nothing though i honestly can do about 5 hours work and then i need to come home and take a med and chill out.
reinvent? yep, studying and practicing programming microcontrollers so i hope i can do some work from home hobby/biz wise. i'll need the ssd though to survive and the work from home allows to be able to lay down and chill when i need too.
didn't mean to hijack your thread socrates but wanted to share that marisa.
The MS Society website (U.S.) has a section entitled "Resources for the Uninsured and Under-insured."
http://www. nationalmssociety .org/living-with-multiple-sclerosis/insurance-and-money-matters/resources-for-the-uninsured-and-under-insured/index.aspx
I don't know how useful these resources are, but it might be worth taking a look if you haven't already done so.
http://www. nationalmssociety .org/living-with-multiple-sclerosis/insurance-and-money-matters/resources-for-the-uninsured-and-under-insured/index.aspx
I don't know how useful these resources are, but it might be worth taking a look if you haven't already done so.
Thank you very much for all your replies, you are all (each and every one of you), in my daily thoughts and prayers.
No, I wasn't naive and thought I was the only one with extreme financial difficulty.
Please forgive me, if I made it seem otherwise, I apologize.
I knew, from the start, having so many symptoms, and especially since my cognitive difficulties have not improved, that returning to work would be impossible.
My Neurologist confirmed that, when he told me, one, I would no longer be able to drive (a vehicle), and two, that I would not be able to return to work, period. He also said his office would help me with Social Security Disability paperwork.
Yes, I am still taking my Rebif, thank God (and I do) it doesn't cost me anything.
The side effects, are a pain in the butt, however if they can slow down the progress, that's a good thing. I was told, flat out, that Rebif could not correct the damage, just help to slow down further damage. This told me, my cognitive issues, etc. wouldn't improve.
We did a vegetable garden, last year, and will be again this year. There's nothing like a fresh tomato from your own garden.
Please, don't get me wrong, I didn't start this thread as a "whoa-is-me".
I know most of us, are having financial difficulties, and we really do not need the added stress that comes with worrying about paying bills, etc. and having food on our tables.
Unfortunately, it seems no one else understands this, but others like us, in this situation.
I wasn't sure, if "not being able to work anymore" was "the rule" or the "exception to the rule"?
After all, I'm relatively new to the MS theater, so I don't know what is "typical" and what to expect.
I know, when I went on vacation last year, I didn't intend to never work again.
I had finally come to a position in my life, that I felt financially set.
My wife had her SSD, and I was making almost $15.00/hr.
That meant we had enough money to pay our bills and buy groceries without having to worry if we would have the money to do all and not be penniless at the end of the month.
No, we did not make enough money, to put back any, but we were OK.
So, I wanted to know:
1. Was being unable to work, anymore, very common?
2. How do you financially survive?
(Does your spouse/significant other still work or are you alone)
3. If you are waiting for SSD/SSI/something else, how do you survive?
I have noticed, that the stress of MS (and it's many symptoms) is overwhelming,
so having to deal additionally with the stress of financial issues, just increases that stress.
I'm blessed to be married, and my wife is a real "trooper", but the financial stress is getting to her, as well.
I cannot begin to understand what it's like to deal with MS, alone.
My thoughts and daily prayers, are with each and every one of you.
I know a lot of what you are going through and dealing with, but I cannot know all of it, how could I.
Writing poems, has always been my outlet, my God given gift and I try to use it as such.
Over the past few years, virtually all my poems are Christian based poems.
Since last July, when all of this blew up in my face, I have been unable to write much, but the last few weeks I have been able to write a few.
It's very difficult to "stay on task" with anything, as most of you know.
I start projects, then "move on" and not finish what I started, and many times, forget what I was actually doing, and my wife has to remind me what I was doing and tells me to finish it, first, before I move on.
I think the cognitive issues, are much more "hard to swallow", than the physical issues (though there are many of those (from limited mobility to MS hug to fatigue to pain, etc.).
Cognitive issues disrupt everything we do.
I mean, that's how we decide what we are going to be doing at any given moment!
So, when we forget what we are doing in the middle of doing it, how will we ever get things done?
Sorry, got off on an "MS tangent"
So, thank you for confirming that all of us, have financial issues, maybe together we can help each other figure out positive ways of dealing with them.
Take care and God bless,
-- Socrates
No, I wasn't naive and thought I was the only one with extreme financial difficulty.
Please forgive me, if I made it seem otherwise, I apologize.
I knew, from the start, having so many symptoms, and especially since my cognitive difficulties have not improved, that returning to work would be impossible.
My Neurologist confirmed that, when he told me, one, I would no longer be able to drive (a vehicle), and two, that I would not be able to return to work, period. He also said his office would help me with Social Security Disability paperwork.
Yes, I am still taking my Rebif, thank God (and I do) it doesn't cost me anything.
The side effects, are a pain in the butt, however if they can slow down the progress, that's a good thing. I was told, flat out, that Rebif could not correct the damage, just help to slow down further damage. This told me, my cognitive issues, etc. wouldn't improve.
We did a vegetable garden, last year, and will be again this year. There's nothing like a fresh tomato from your own garden.
Please, don't get me wrong, I didn't start this thread as a "whoa-is-me".
I know most of us, are having financial difficulties, and we really do not need the added stress that comes with worrying about paying bills, etc. and having food on our tables.
Unfortunately, it seems no one else understands this, but others like us, in this situation.
I wasn't sure, if "not being able to work anymore" was "the rule" or the "exception to the rule"?
After all, I'm relatively new to the MS theater, so I don't know what is "typical" and what to expect.
I know, when I went on vacation last year, I didn't intend to never work again.
I had finally come to a position in my life, that I felt financially set.
My wife had her SSD, and I was making almost $15.00/hr.
That meant we had enough money to pay our bills and buy groceries without having to worry if we would have the money to do all and not be penniless at the end of the month.
No, we did not make enough money, to put back any, but we were OK.
So, I wanted to know:
1. Was being unable to work, anymore, very common?
2. How do you financially survive?
(Does your spouse/significant other still work or are you alone)
3. If you are waiting for SSD/SSI/something else, how do you survive?
I have noticed, that the stress of MS (and it's many symptoms) is overwhelming,
so having to deal additionally with the stress of financial issues, just increases that stress.
I'm blessed to be married, and my wife is a real "trooper", but the financial stress is getting to her, as well.
I cannot begin to understand what it's like to deal with MS, alone.
My thoughts and daily prayers, are with each and every one of you.
I know a lot of what you are going through and dealing with, but I cannot know all of it, how could I.
Writing poems, has always been my outlet, my God given gift and I try to use it as such.
Over the past few years, virtually all my poems are Christian based poems.
Since last July, when all of this blew up in my face, I have been unable to write much, but the last few weeks I have been able to write a few.
It's very difficult to "stay on task" with anything, as most of you know.
I start projects, then "move on" and not finish what I started, and many times, forget what I was actually doing, and my wife has to remind me what I was doing and tells me to finish it, first, before I move on.
I think the cognitive issues, are much more "hard to swallow", than the physical issues (though there are many of those (from limited mobility to MS hug to fatigue to pain, etc.).
Cognitive issues disrupt everything we do.
I mean, that's how we decide what we are going to be doing at any given moment!
So, when we forget what we are doing in the middle of doing it, how will we ever get things done?
Sorry, got off on an "MS tangent"
So, thank you for confirming that all of us, have financial issues, maybe together we can help each other figure out positive ways of dealing with them.
Take care and God bless,
-- Socrates
I'm sorry you are going through all this. I hope things get better for you.
To answer the question. I've not be diagnosed with anything yet, but I've been unable to work since September 2009, when I forced out on Medical Leave, then laid off when I came back. The fatigue and cognitive issues are what's keeping me out of the workforce at the moment.
My Company's Insurance carrier denied me Long-Term care insurance because I had too many health problems, then denied me short-term disability because I couldn't prove, through medical tests, that I was too sick to work. Seems a bit duplicitous to me.
I'm currently living off my savings( thankfully, I've always been very frugal ), hoping still to recover, but assume I'll have to re-invent myself once again, and change careers if/when I do recover (my current career, as a Network Security Engineer, forces me to work all hours. Working 16-20 hours straight is common. Some work needs to be done between midnight and six A.M., some can only be done on the weekend, etc.). Its a very exhausting career.
Take care, and I'll say a prayer for your recovery (both physical and financial).
Mar
I am so sorry about your financial troubles, but I have no experience with SSD or SSI (and no words of wisdom, unfortunately).
Are you still able to take your Rebif? I know it's not supposed to work like this, but my DMD actually helped me. My neuro said that the medicine allowed my brain to heal. I was on the verge of using a wheelchair and after 9 months on the medicine, I was able to walk without problem. I think Rebif even works faster at slowing down the MS attacks.
I'll pray for your return to health and an end to your financial troubles, my friend.
Deb
Are you still able to take your Rebif? I know it's not supposed to work like this, but my DMD actually helped me. My neuro said that the medicine allowed my brain to heal. I was on the verge of using a wheelchair and after 9 months on the medicine, I was able to walk without problem. I think Rebif even works faster at slowing down the MS attacks.
I'll pray for your return to health and an end to your financial troubles, my friend.
Deb
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