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?
I am not working and had to wait 5 1/2 months for my company disability to kick in. The sudden disability was a surprise and a huge blow with a sick child, and 2 kids in college.
The kids in college suddenly had to get loans and I shopped VERY frugally. We did nothing for entertainment, etc. Just eked out an exsistnece. Our only saving grace was my husband still has his job and insurance.
I am sorry that you are in financial straights and I hope you get some answers soon regarding your SSD. I , too , am in the process of applying as my company disability insurance is extremely limited.
I worked for most of my life up till 2007 then had to stop because of symptoms... haven't been able to return to work. Took over 4 years for aDx...now Dx with SPMS and not getting any better, slowly worse..
i have not worked sence may 21 of 2008 was fired do to not comeing in to work on my day off (was haveing a bad MS flair and to tired to go in ) first time ever not going in when boss man called so realy i didnt get days off i worked 72 to 85 hours aweek with 4 kidds last baby i had in 11/ 8/ 07 i worked up to 3 days till i had her and went back 10 days after i had her
im single now i dont get SSD do to not getting all 20 work credits i have 18 ggrrr so i get 674.00 amonth i do get medical cards for all 4 girls and myself pluss food stamps and cash asstance of 380 monthly i have no car cant drive it any way no need to pay inc . so i sold it
my rent is 500 month for 4 beds and if i dont use to much electricty or gas for heat and water each month i have a wapping 20.00 to 30.. bucks left to buy none food things i pray my kids dont need shoes or new clothes cause i spend most os the extra cash on dipers for my 2 1/2 year old i know i know get that kid out of dipers and on the potty i would if i could but she has cp myosistis and possable autism wating on tests right now
so she will be in dipers for a while first hubby dead beat second hubby realy is dead and stephs father cant handle her and i both with disabiltys so he took a hike whoo hooo no more stress that way cause he dont even come around much asked him back in january for a soft nippled sippy cup for his daughter still waiteing for it lol
how do i make it each month by the grace of god i have no family around here but my dad and that is a big no i will not ask that man for help ever (long stroy)
i have 7 older brothers but no help there they dont even call me i call them but they never call me back so i on my own SO i know how u feel and what your going through get out the cupons and buy in balk freaze lots of meat dont know if u have a shop n save there or if they have the pick 5 for 20.00 in the meats if they do one month stock up on meats nezt hit the 10 for 10 foods
when out and about hit the restrooms and snagg some TP i know its stealing but u have to do what u can when u have no money buy all cleaning stuff that says conintrated and add water when u get low or save old bottles and put 1/2 in it and add water to both now u have 2 months worth of lundry sudds same way with dish sudds hope this helps
and i will keep u all in my prayers and when things get bad smile make people think ur up to something even when the floor comes up to give u a bigg hard kiss lol just smile like i did when my 4 year old asked why i was down there i jast told here i was saveing electric and picking up fuzz by hane now she realy dose pick the carpit for me lol its a game to her well bye for now may GOD be with you in this time of need
how do i make it? i'm blowing my savings. my home is soon to go into foreclosure. i have looked for work for 2.5 years but never was hired. i work temp now for about 25 hours a week. couldn't do anymore than that really. too uncomfortable after that and take meds to take the edge off.
yes, i did quit a very well paying job to more to this city. but, i was also having many health issues at the time, plus work and i had reached apoint where i felt it time to move on, and the va was rationging the health care by theis process, "it isn't life threatening, we don't know what is wrong so nothing is too wrong and we aren't going to persue it so go home".
i applied for ssd. didn't want to but i see the writing on the wall with my health.
i may even have to have neck surgury to reduce the upper right quadrant pain & related symptoms. if it isn't the neck then it is the ms. if i get tossed out of home, not a good time to have surgery. not sure i have enough confidence in the va cutting on me anyway. probably come out a quadraparapalegic or dead.
and i don't know if ssd will actually be granted. they accepted my neuro stuff without having me see one of their doctors. so i hope that means they agree with that.
so, i have some understanding of your situation and can say i really really hope we get some stable relief on the money side of things.
I stopped working may 08. We already had our home with a big mortgage so we have been trying to sell it for the past 2 years with no luck.
My hubby works but its not enough to cover bills so we have been winging it too. Sold both our cars, took students in for a while, basically trying to keep our heads above water. We are desperate to sell the house now so praying for a buyer to come along.
I am not able to get disibility here as hubby works but its a pittance anyways .Not enough to live on thats for sure.
We get child support from my ex for my children so that helps with schooling and there clothes etc.
It is a very stressful time and I sympathise with your situation. We have become resorcful. I even put in a vege garden and are growing veges so that helps.
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.
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).
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.
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'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.
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.
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 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.
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.
I am just lucky that MS grabbed me at the end of my working career. There is no way I could now hold down a job. I depend on Social Security retirement benefits and a very generous pension, which I worked hard for for 32 years. My investment income wouldn't last me 2 months.
I am a believer in medical science, and feel sure I wouldn't be as well off physically today without Avonex.
I had my my first child at the rip old age of 19 years old. After having a not so good relationship with my sons biological dad (to put it nicely) and leaving, I got my act together and started to work on myself on my own, with my young son.
I've worked a few odds and end jobs, and started college. I met my husband in 1995 and we added several more children to the list. Most of my life I've been a housewife. I had the privilege of staying home with the kids. So my work history is almost non-existent.
I decided, once all the children were in school full time, I would go back into the work force, or go to college. Then all this happened. I've been trying for 3 years to find what is causing it, so I can go and do what I want to do, but right now my disability seems to keep growing and the answers aren't coming like I would have hoped.
I've thought about filing for disability, but it seems, since I lack the work history, I can only get SSI, and really I'm still waiting for a firm diagnosis before doing anything. My doctors told me to go for it, but I'm still putting it off. I might suck up my pride and do it, but I know eventually if my husband make too much money, it won't matter anyways, because you won't get anything from SSI.
I was off work a full year (2007-2008) after initial dx, due to severity and persistence of symptoms and three major flares in that year. Each time I would plan to return to work, I was hit again, in a different part of my CNS with a host of new symptoms each time. It seemed it would never end and this was how I would live out the rest of my days. However I was very fortunate to be able to return in Sept 08 and have missed no time from work directly because of my MS since that time. I am actually off this week, lousy cold I can't shake and some pseudo-flare stuff because of it, but that's all. I was 'lucky' enough to have my last flare (ON) while on vacation and it was treated and resolved before I was scheduled to be back at work.
That year off work was very tough, and if I knew then what I know now, I would not have isolated myself so much. I really struggled with the dx and wanted to keep it quiet. I didn't even tell family at first. Keeping it a secret eventually proved impossible after being off work for so long. If/when I find myself in that position again, I will try to do better in terms of reaching out to friends for support. Friends and loved ones often want to do something to help, but often don't know what to do, and what would be helpful is different for each one of us.
In terms of financial security, for those for whom its not too late, LTD insurance is so important. For those still in limbo, if you have the means, this is the time to look into it, though be careful as it is possible to be disqualified from receiving benefits if the insurer can prove pre-existing condition even if you didn't have a MS dx when you first purchase the insurance, if there is evidence something was going on due to history of medical appts, tests, etc. Look carefully at the pre-existing condition disclaimer if there is one.
I haven't worked since the early 90's and I've been on disability for 11 years. I struggle every single day, and because of my income, my family and I never get proper nutrition. As of tonight, I'll be dropping my car off at the dealership when they close (due to the embarrassment) because I can no longer afford the payments. I'll be leaving a note under their door with an apology letter, and I guess I'm gonna have to apply for the "sick bus" to take me back and forth to my appts.
What I've been doing to survive is going to food banks and I finally humbled myself and applied for food stamps and housing assistance (HUD). You can also ask your church for help, or go to any church for that matter, but it seems to be getting harder and harder to get any help because so many people go in, and take advantage of the churches (drugs addicts, etc), but it doesn't hurt to try.
When you live in a big city, most of the time there's a church that serves lunch or dinner, sometimes both. I'd check out the phone book and call around. Good luck to you!
I wouldn't count out the possibility of improving--especially since your DMD will allow for slowing down or haulting the disease process. The lesions will still be there, but it's possible for improvement. DMDs are supposed to only slow down the process and possibly prevent further attacks. It does allow your brain, however, from being hit again and again with attacks in the same area and allow for healing for those with RRMS. It's effectiveness is 33% in doing just that--a decent percentage.
Prior to treatment, I was not able to even stand in the shower and was using a shower chair at one point. I needed help walking to and from the restroom from my bed. I also was rolling around in my desk chair at work. My neuro had written a prescription for a wheelchair which I hesitated in getting. However, nine months after starting Copaxone, I was walking without problem, standing in the shower, etc. My cognitive abilities have improved for a long time (not so good now--hoping for improvement). Hold on to the hope, my friend--especially with knowing that prayers are going up to our Heavenly Father from your friends on this forum.
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