How many of you do NOT work anymore

[socrates2k1]

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?

[mary2010]

I am so sorry to hear you are having this difficulty. I went through a financially difficult situation back in 2002 through 2003, when the MS was at its worst.

In 2003 I lost my car, house, job and went through my savings as well. Back then the MS was so bad I was in bed most of the time. I couldnt drive because of tunnel vision and sometimes blurred vision from optic neuritis. I spent most of my time in bed, in pain and with bladder problems, numbness and weakness and balance problems. I sometimes had trouble walking and needed assistance with that as well. I applied for social security disability and was denied twice because of my age and because I wasn't in a wheelchair. I hired an attorney who advised me that I could not work not even one day in the next two years because I would lose my case in court. I told him I could not wait 2 more years to go to court, I have no income and will be on the street.

So in desperation and searching for answers about recovering from MS, I spent some of my savings on homeopathic doctors, alternative treatments, detoxification treatments, herbal treatments and chelation therapy and fortunately for me, I recovered sufficiently to return to work in 2004.

Back in 2003, it seemed I was never in remission. Nowadays,  I only have exacerbations about once a year, and found that I can stay out of exacerbations if I follow a strict diet that includes no fish (mercury poison), no wheat or dairy. Doctors don't always have all the answers, sometimes following nature can provide better answers.  

My health is better now overall then back then and I have never been on any CRAB treatments. I still work for the same agency as I did in 2004. I no longer have ANY vision problems, my vision is 20/20, I need NO walking devices and my bladder is fine. I don't spend all day in bed either.


Mary

[Mustang0064]

I have been off work a year now as of April.  I have had MS for over 10years now and continued to work up until then.  I have always had very physical jobs and the last one i was there for 10 years it was in a biotech farm so lots of recordkeeping and injections and logging of tasks.  With my memorie now i can't even think of returning. Let alone the fatigue.  
Luckily i had good disability insurance at work and my hubby has full medical.  It was tough last year during the 15week waiting period we have i was on U/I.

Hubby works on heavy machinery for Hydro lines (backhoe/shovel equip etc.)Thank God!  He also takes good care of me and spoils me rotten.  I have been with him for almost 14years so when i was diagnosed in 1999, he was and still is my rock.
he was driving truck then and would hurry up to get back and park his double trailers nearby and show up at the hospital in a Huge Transport, i would watch from the window him getting the parking attendant lift up the barriers by hand to let Eric in funny to see that.  

I don't intend to return to that job, it's just too much (Pharmathene.com) Canada Farm making Protexia a vaccine agains bio-terrorism.  I loved my goats there like they were my own...i wish i could go visit.

Now i try to keep myself occupied but haven't found the peace i am looking for yet, comes from the guilt of not working, i think.

Take care and i hope all works out for you!!

Mustang00

[grannyhotwheels]

Wow, I can really relate to everything you are saying. I'm sorta going through the same stuff right now.  I actually started receiving my disability in 2006.  My husband had a really wonderful job and made $4,000.00 per month.  We where making it fine and had quite a bit put in savings every month.

Then the world as we knew it came crashing down.  My husband became ill and ultimately lost his job.  That was in January of 2009 and we are still fighting for his disability.

I am so close to having to file for bankruptcy that I'm scared to death.  We are having to borrow from Peter to pay Paul as the saying goes.  We are maxed out on our 2 credit cards and about 2 months behind on everything. If he doesn't get approved pretty soon we are financially ruined.

As you can see I'm right there with you and I don't have a clue what to do and I also don't have one bit of advise to offer you.  What I do have is a loving GOD whom I know somehow will see us through.  So I can and will offer you my prayers.

Hang in there my friend and remember he wont put more on your shoulders than you can handle.  If your like me you've pretty much reached your weight limit, but only he knows when that has happened.  Stay positive and lean on these wonderful people right here for their comforting words and wisdom.  I know I could not get through this without them.

I'll be praying,
Carol

[Quixotic1]

So, sorry, Soc.  I never know whether to lead with it (sounds like tooting my own horn) or just let it be.  I guess I am most comfy with just talking as from a knowledgeable person.  We have many health professionals and science professionals here on the forum.  Often they have better info than I.

My story is my first journal entry.  I was a pediatrician for 23 years - Indian reservation, East LA, South Side of Chicago (the baddest part of town) and rural Nevada.  Since the MS I read as much of the medical literature as I can.  I alwyas loved teaching my parents and kids.

Quix, MD

[socrates2k1]

Wow, I was not aware you were a doctor?
No wonder you speak with such authority on issues.
I will try to keep that in mind, but you know how that goes

Thank you, so very much, for taking the time out of your day, to listen to the rest of us.

God blessed you, with a great gift, and I'm glad you have still found a way to use His gift.

I want to thank you, for sharing your gift (with me) and all of us.

It helps knowing, someone in the medical field, can truly understand what each of us is going through, because you are struggling with it, yourself (unfortunately).

Thank you, take care and God bless

-- Socrates

[Quixotic1]

Only about a third of people diagnosed with MS are still in the workforce.  I had to leave medical practice a year after diagnosis due to the severe fatigue and increasing slowed thinking.

My SSDI was approved within 4 weeks of application, when my diagnosis was only Chronic Vertigo.

I was lucky enough to have a good disability policy and a good income to base it on.  I was very, very lucky.

I feel like a shell of the person I once was.  Working on the forum is the only thing that gives my life meaning.  

Tell all young people to carry disability insurance.  Once you need it it is too late.

Q