I was diagnoised with Lyme 3 years ago. Since I started lyme treatment I have worked a few different jobs. But I have been recruiting for the last year or so.
I have never gone on disabilty because I always felt like it was that was only for really sick people. Even through 15 months of IV Rocephin I still worked and hid it all from my work and co-workers.
I just started at a new company in the IT area of recruiting which has been really tough. As well I started IM Rocephin and re-tested for lyme. I thought for sure I would test neg, despite my consistant symptoms. I tested positive.
After speaking with my LLMD yesturday she feels it's time for me to go on disability. So I guess my question is, those of who you have gone this route (I'm in northern CA)how sucessful have you been.
Being able to feel like I can contribute to society through work keeps me emotionally sane. I took off one week inbetween jobs (about 3 weeks ago) and I spent 12-15 hours sleeping per day, but I can't just sit and do nothing. I like to be productive and be around people.
I'm 24 and it's been 3 years of wasted weekends in bed and a huge losses of time. There are so many things I want to accomplish and I feel like I can't get anywhere because of this disease.
So I need to know, for those of you who have gone on disability how has it affected you mentally, physically, has your lyme improved, how long were you on it for, how did you maintain financially?
Thanks so much! I know this was really long but this is so important to me.
Lindsay
Posted by tailz (Member # 10014) on :
You work in IT? That may be why you ended up with chronic Lyme. Exposure to EMF/RF seems to trigger my bugs.
Posted by Keebler (Member # 12673) on :
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I never thought of it as "going on" but rather collected from the retirement fund to which I paid in.
"going on" has such a tone to it that I never say it that way.
I had no choice. It was simply register and request the "disability" SS funds - like a grant.
- believe me, you won't get bored. it's a full time, job getting well, and you can still work some if you can - or volunteer if you can. you'll still be able to think. as for being around others, the sooner you get better the sooner you'll be able to do more of that.
It does carry sadness with it of course, as it seems the end of of a career dream or financial stability - and freedom.
You are lucky that you can get treatment. Most can't. That will help improve your chances.
Still, along new avenues, you will find ways to still enrich your mind and your spirit, believe me. Rest may be a way there, though, at first.
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Posted by hcconn22 (Member # 5263) on :
15 months of IV Rocephin is a lot of heavy duty treatment. I would look at some other treatments if that is not working.
Have you been tested for co-infections.
As far as disability I have not worked for 15 months now and used to be at a VP/executive level. I could no longer try to work in good faith knowing that I was so ill and could not do good work due to many cognitive problems.
Put all aside to try to get better.
Am feeling about 60-70% better after past 6 months of treatment. Looking to go to the end of the year to get back to work or something..
Posted by smiles132002 (Member # 7949) on :
haha, no I just started working as an IT recruiter about 2 weeks ago, I used to do nurse recruiting. I got lyme over 10 years ago and went undiagnoised for 10+ years but start antibiotics (mino, doxy, amox, etc) for my skin when I was 11 or 12 and stayed on them until my senior year of high school.
But what I want to know is if you have gone on disability did it help you or do you think continuing to push yourself to work is fine because going on diability didn't really help you.
Thanks, Lindsay
Posted by smiles132002 (Member # 7949) on :
Yes, I did oral antibiotics for 2 years because I couldn't get Kaiser to cover IV. My mom didn't think IV was necessary so after two years she finally caved and switched insurances.
We did 15 months of IV but I took a break for 2 months because my insurance cut me off. I've had to pay for most all of this out of pocket.
We are looking at other options like herbs, but the side effects of those can be very strong and I fear that unknown when I have just started a new job is very risky. I can't afford to be "sick" in my first 3 months.
I am so confused about what is "right" for me to do..Has the 6 months helped you or do you think it could be longer?
I know I didn't put the disability statement as elquintly as I could have and I know that in reality people who go on it for the most part really do need it. But I just never thought I would be that person. Then again I'm 24 and I will never see all the SS I put into the system.
If I go on disability I am not going to kinda work..I am going to quit and just focus on my health..which means really admitting I am sick. I thought having a central port line made me accept that I was sick, but bc it worked so well for me it was exciting to be on it.
I did that whole treatment but I couldn't maintain off it. Now, 7 months since I was on IV Rocephin I am a mess.
Thanks for your thoughs for sure!
Lindsay
Posted by smiles132002 (Member # 7949) on :
I have all three co-infections, babs, bart, and erichlia
Posted by bettyg (Member # 6147) on :
lindsay,
i've had chronic lyme 38.5 years.......
34 years MISDIAGNOSED by 40-50 drs/specialists.
got bit xmas 1969; sick jan. 1970 and worked continuously until 12-31-98.....
28 years worked NOT knowing i have chronic lyme!!
i was the biggest sick leave user and every year got a good talking to about it; i was NOT abusing it; i was sick...just didn't know how sick until 4 years ago july 04.
i left work age 49; worked 30 yrs., 7 months, and left/quit with NO BENEFITS: PAID SICK LEAVE, HEALTH INSURANCE, ETC.
hubby HAD retired with FULL benefits the year before me and i lucked out to be included in his HEALTH BENEFITS AS "SPOUSE"!
1 WAITED 1 YR. BEFORE I FILED FOR SSDI.
it took me 5 years of PURE HELL to be approved; 2nd claim I WON REPRESENTING MYSELF AT ADMIN LAW JUDGE HEARING!!
my lawyer of almost 4 full years quit me; and i was on my own.
YOU HAVE TO WAIT 5 MONTHS BEFORE YOU FILE FOR SSDI! but you have time to get a well-documented medical file with special forms done by SUPPORTIVE DRS. to show all your PHYSICAL LIMITATIONS.
you can go to www.socialsecurity.gov and look up about SSI, supplemental social income, to see if you can sign up for that now before you sign up for SSDI!
your question; by being approved promptly, you can devote your ENERGY to AGGRESSIVE TREATMENTS TO PUT YOU INTO REMISSION vs.
the hell of receiving SAME PAPERWORK OVER AND OVER and all their deadlines, etc.
so did getting disability make it better for me .... YES! the mental state of finally being acknowledged I'M VERY SICK AND "PHYSICALLY" UNABLE TO DO THIS WORK AND OTHER WORK is legitimate! betty Posted by smiles132002 (Member # 7949) on :
Thanks betty...obviously you're a major supporter and communicator in the lyme community here and definately try to help us all out.
Being that I have repeatidly tested positive for lyme and I have two litagations going on with insurance companies I don't see me getting disability as a MAJOR problems, but obviously I've never gone through the process so like most lyme ANYTHING it seem to take a lot of time.
I know that I am sick..I didn't mean to imply that I didn't know. I just wonder if only being 24 with very little "work" experience behind me how long will I even get SSDI? What happens after that. Further more does that automatically qualify me for medicade? and once I go on that will I be able to get "regular" insurance ever again?
I am so worry about being in a position where at the end of the day I have NO health benefits.
Thanks so much for sharing Betty that was a ton of great info
Posted by SL10 (Member # 12953) on :
You might want to do some general googling on the social security disability process and timing.
My husband has lesions on his spinal cord - one of the conditions listed in the SSDI handbook that is supposed to be a "slam dunk" determination.
It took 6 months for them to process his application. He was denied. It's been another 6 months waiting for the reconsideration decision. We're told another 6-12 months if the reconsideration is denied and we have to go to a hearing.
There's just no way to make a responsible financial plan counting on SSDI until you have an approval letter in hand.
Posted by feelfit (Member # 12770) on :
Lindsay,
I felt the same as you when I filed for disability. I was young, felt that people looked down upon folks who were on disability etc.
I can tell you this, it finally came to the point where I had to make the decision to file to save my life.
I think htat your doctor is right. You have been in treatment for a long time, yyour body needs rest. I can gaurantee if you come to terms with accepting this and getting the healing rest that you so obviously need, you will have a chance to feel better.
You are only 24 you need to get well now before your life slowly melts away with this illness.
In answer to your questions: Yes, Medicaid will cover you, yes, you will be able to get regular ins. when you are able to work again.
SSDI works by looking at the quarters that you have worked in your life so far. You have to have a certain ammt. of quarters worked in order to qualify.
You do not have to look at this as a negative, long term arrangement, but rather a temporary solution on your path to wellness.
I don't think that you will be bored or feel useless....there are many productive things that you can do when you are having a good day.
Making this decision was the best thing for me, and actually brought me peace that I never was able to latch on to while sick and working.
You may want to consult with a lawyer who specializes in SS. Also I think BettyG means that you have to wait 5 months from the start of being ill.
Since you have been sick for many years, I think htat you can start the process immediately, providing that you have the quarters worked that are necessary.
Good luck. I hope that you find your peace.
Feelfit
Posted by smiles132002 (Member # 7949) on :
Feelfit how long did it take you to get SSDI? What about in the mean time? What are you suposed to do? Can you continue to work until it goes through?
Why does it take so long? I re-tested positive for lyme, but my spinal tap was clean, I haven't done a scan of my brian or whatever that is that shows your brain loss/gain.
I am guess my employer will find out that I am filing right?
How do you even approach that? None of the companies I have worked for knew I was sick.
Thanks, Lindsay
Posted by bettyg (Member # 6147) on :
quote:Originally posted by feelfit: [Lindsay,
You may want to consult with a lawyer who specializes in SS.
Also I think BettyG means that you have to wait 5 months from the start of being ill.
Since you have been sick for many years, I think htat you can start the process immediately, providing that you have the quarters worked that are necessary.
clarification;
feelfit, NO, your time starts from your LAST DAY PHYSICALLY WORKED towards the 5 months...
unless i misread above; which is VERY EASY with 38.5 yrs. of neuro lyme!
since i'm working on reorganizing all my SSDI info and writing a table of contents for it ... then my newbie package will be posted online in medical like treepatrols is....
lindsey, go to SUPPORT to top and look for MINOUCAT's post on DISABILITY! she has most of my stuff.
read info from CONNIC MC, a NON-LAWYER who represents SSDI people up to where she represents you before the admin law judge!
then she is NOT allowed to go to federal court.
you would want an ERISA LAWYER for SSDI! ***************************************
i'm glad she commented on other stuff; which i have NO knowledge being 59; vs. you YOUNG THINGS!!
good luck! with the info WE have here which includes DISINISSUES, disability insurance issues, website info .... YOU CAN WIN ... 1ST TIME; 1ST STEP WITHOUT A LAWYER!
read about it! and start your compiling your claim info NOW! Posted by METALLlC BLUE (Member # 6628) on :
It helps. Continuing to push is a waste of your time, if you're pushing against a wall. Lyme will always win in the end.
However, there is one good thing about pushing. It's good for the spirit.
Disability is a tremendous help. It takes the pressure off of being responsible. It allows you to save money and resources, and to be able to put time into your recovery.
I am fully disabled, most days I'm too sick to do much, but on my good days, I work part time doing odd jobs, repairing things, cleaning, etc -- 10 bucks an hour. Puts gas in my tank, to get me to doctors etc. *lol*
But seriously, working under the table is best IMO when you do get disability. There are all these rules about how much money you can invest in stocks, how much money you can have in the bank, etc.
Posted by Vermont_Lymie (Member # 9780) on :
How about working part-time? Part-time from a job, and a couple of days/week from home? It is very difficult, but it can help to make money and get one's mind off being so sick!
Posted by feelfit (Member # 12770) on :
This is what happens while you are waiting for SS approval. You have no income. You will need to rely on family for support during this time.
On the other hand, the good part is that when you are approved, you do receive a lump sum dating back to the last day that you worked. this is why most lawyers work on a contingincy, they take something like 1/3 of your lump sum if you are approved.
If you are never approved a lawyer working on contingency is owed nothing.
I did not have a lawyer. I did everything myself. Went to medical library of a local University and copied the SS guidelines. My doctor wrote a letter responding to EVERY point on these guidelines and included medical records. Approved 1st time around. Took about 3-4 months.
the guidelines are the key.
As for the 5 months since you last worked, BettyG is right. In my case, my attendence was so sporadic that even though I was still employed, they did not count it as measurable employment.
Feelfit
Posted by Tracy9 (Member # 7521) on :
There is a maximum the attorney can take; it is $5300. This is a huge plus for those of us who might be getting HUGE lump sums if we are ever approved!
It has been three years since I applied. I recently got a letter saying my ALJ hearing is coming soon, but no date yet. This is okay though, because I am running around like crazy trying to get updated medical records to them in time.
When I first applied, I was in tears. The Social Security worker looked at me and said, "This doesn't have to be forever."
I always think of her saying that. I dont' intend for it to be forever.
Posted by smiles132002 (Member # 7949) on :
I tried working part-time for a while, but I guess my bottom line is if I am going to go on disability it would be for the sole purpose of NOT working. I would like to just try doing nothing (I use that term loosely to mean rest, get well, etc) and see if I get better. Even if it takes a year.
The problem is that without income or insurance I will have to pay quite a bit just for basic meds, labs, and then I just know my LLMD will be like let's do Vitamin C infusions and herbs and $500 treatments weekly.
I know this isn't anyone's problem but mine but I live in a very expensive area in northern CA and my salary at 24 (not a college graduate) is far from good. So my monthly disibility is going to be pretty meak.
Maybe I will just have to stick it out for 6 months and see where I am at then. I really do love my new job and they seem to be pretty cool, laid back people.
Thank you for all the advice
Posted by bettyg (Member # 6147) on :
tracy,
VIDEO CONFERENCES are quicker where you go somewhere close vs. normal judge's room at DDS headquarters!! good luck.
when i went, i took my own tape recorder and recorded our session; since 1st time, they REFUSED TO GIVE US MY TAPE EVEN AT APPEALS COUNCIL LEVEL!! Posted by jocus20 (Member # 11576) on :
I just got approved for ssdi. It took me almost 2 years to get it after being denied once then haveing to appeal and get a lawyer.
Im really grateful that i was approved because im dead broke out of money and all my credit cards are maxed out due to medical bills.
I too am 24 and never expected to be on disabilty at such a young age but im gona make sure that its not permanent. For me it was needed.
Good luck with whatever happens
Posted by InADaze (Member # 7711) on :
I am currently on long term disability, paid by my last employer. It took my doctor reminding me how unsafe I was to drive to really put it in perspective for me. I have not driven or worked in 3 years.
If you can continue to function and contribute in a meaningful way, I would recommend you keep working at some level, perhaps only part time. Not working has definitely taken a hit on my self-esteem, since I was always a go-getter and was on a fast track for promotion.
But, your health is more important than your career. You can always restart your career progress, but you can't always rebuild your health. Listen to what your body tells you.
If you feel you are straining a lot, perhaps it's time you dialed things back a bit. In the end, it was the vertigo, and the fact that I had to pull over my car in mid-afternoon and take a nap in a random parking lot that convinced me I was no longer really doing my job right, and that I may even be a danger.
I wish you luck sorting this out. It's a difficult question. But, imho, your health comes first.
Posted by lpkayak (Member # 5230) on :
my body is so full of osteo arthritis-need many surgeries and pt-all documented with xrays-worked for 10 yrs after first surgery was ordered-to get my last two kids thru college
i was approved ssdi first time for arthritis-surgeries will probably not be done before i am 62 when regular ss starts
i retired early-lost a lot of benefits-but had a minimum of $ to get thru the 6 months waiting for ssdi. i had lawyer and needed him. i had moved and new state didn't understand about old state where i worked most of my life.
moving to a cheaper place to live was smart.
i have also been hospitalized for lots of things recognized by mainstream med since going on disability
i never mentioned lyme
my days today are taken up with "working" to get well. it takes all my time and i never finish.
i fantasize about working again-last night on a post i talked about maybe teaching riding part time-today i realize there is no way. it was awful to have to get up to let the dog out. i am so full of pain everywhere. why? because i vacumed and took a 1/2 hour therapeutic riding lesson.
i could easily spend 3 hrs a day in a gym doing PT-with lots of rest in between exercises
sauna or hot tub or detox bath
organizing and fixing supps and good food
paying doc bills
finding a little bit of something to be happy about that is fun-thats a therapy too
helping others when i can
my house is always a mess, i often don't have food/supps i need, i rarely get 8 hrs sleep due to pain and insomnia
i stuck it out at work for much longer than i should have. i got 5 injuries in the last 16 months because i was so fragile. the last one really totalled me--it was a whiplash from being hit in the head and it made my car accidnt whiplash from 10 yrs before seem so eas in comparison (i was out a year for that cuz of vestibular stuff)
anyway-i think i got worse than i had to get by working and not prioritizing treatment...but i don't regret it. my priority was the kids. they are all independent now and i can take care of me.
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