My Social Security Disability Journey

My mother used to use the phrase "play the hand your dealt, and play it well".  We can never predict what is to come, and Goodness knows, we get thrown a lot of curve-balls in life.  Of course, you had never intended for your life to turn out this way, the key is to handle your new situation with courage, determination, and above all, grace.  You are a strong and beautiful person first, then one with a disability.  Your disability does not make you less caring, funny, or even less sucessful.  It just is. It demands a lot of attention and patience, but in the end, your loved ones love YOU.  Your disability doesn't even enter the equation.  Congratulations for having the courage to share with others, for you know they are thinking the same self-defeating thoughts.  PS...does anyone know the statistic for failed marraiges when one partner is chronically ill?  I bet it's pretty high.  You are not alone, my friend.

Hell-o  Nancy,

I must say I thourougly enjoyed reading your post. Yes, it was a very sad and very difficult mews letter to read but needed the experience. I am so sorry that this journey has not been a blessant one.

While reading your post I got to wondering if maybe I should send you an email explaining why you were thinking  and feeling the way you were.

Strange how it is said "silence is "golden". To me in 'our' case(s) we don't have alot of choice(s)

I didn't fall and hit my head but I have many times and HARD too. I also have very serious cognitive issues.  

It is too bad that guilt and stigma seem to be all that we have at times. I must say that it is more my feeling then anyone else's.

I am so sorry that this struggle for you has become so unfair.  

Strange as it may seem I am glad you wrote what you wrote.  I will get back with you in a moment. Plumbing call. I would very much like to hear about all the challenges that you have faced. 

I hope this hasn't become too challenging for you. I am kind of a mess right now so I don't  know how long I will hang on. 

Marlene                                                                                                                                                                                                             

Nancy,

Thank you so much for sharing. Your honesty is very refreshing. I really appreciate how "real" you are about what you are facing/walking through and how it is affecting you. It is so necessary for the rest of us to realize that sometimes we go through the ick and it is what it is...icky and we don't have to try to make it pretty for others. (Using mild family friendly words.) And the truth that sometimes it is just ikcy, is something we can all relate to.

My heart goes out to you, Nancy. I am happy that you "won" so that you can get the support you need but I can see the struggle with the new label.

Thank you again for your post.

Hugs,

Kelly

when life hands you lemons.  Thanks for sharing your story, Nancy.  It was very moving and I can relate a lot to the difficulty of accepting the limitations we live with.  I do want to congratulate you on your "win" because you are entitled to the benefits and they are something your family needs and deserves.  But boy it really is hard to practice acceptance sometimes, and I could completely get how being "officially" labelled would not feel like good news. 

The judge recognized, and has now forced the Social Security Administration to recognize, what you already knew to be true, and it is also true that you worked a lifetime to pay into this fund and are entitled to the benefit of it.  That's why it's there.  But labels are hard.  "Fully disabled" is a description of certain information about your life.  But it is not a definition of who you are.  You are also a caring person who does an enormous amount of good here on this site, who has contributed a body of really helpful writing that people will use for years to come, who is relied on and loved by family and friends. In all of these realms you are very very able.

When they give you the label and the benefits, they can't take any of that away from you!

Hugs,

Megan

What a wonderful post! You could never let me down.

Hi Nancy,

I know exactly how you feel. It didn't take me years to win my battle with Social Security, but it was still a long battle that I didn't think I would win and when I did win I though I would feel the excitement my parents felt, but I didn't. I was 22 and now considered disabled. I had nothing but failed jobs and empty school years to show for my life. I knew I deserved the small benefits of insurance and income that SS was going to provide, but I couldn't get past the feelings of failure in my personal life. To be honest, it's 4 years later and I still have those negative feelings at times.

The best thing I can do is try to stay positive and hope that one day I can return to work. Whether it be work at home or in a work place will be determined later, but I need something to hold on to. I also try not to consider myself disabled so much. Yes, I am disabled by my migraines a lot of the time, but I am also a functioning person on good days. I have to concentrate on my good days and remember the fun and able-bodied person I am on those days. Otherwise, I fall into a deep depression which turns into a viscious cycle making things a whole lot worse.

Perhaps in time you will get used to the disabled label, and honestly for me that is what it has become, a label so my insurance company and social security will recognize that I have a serious condition that is painful and can be disabling during an attack. My doctor already knows how serious it is, but its the money hungry companies who don't and need that label to take anything serious.

Congratulations on winning your case and having those companies look at you like you are a person! I hope in time things get better for you.

Nancy,

You help so many people by your posts on this site!  Your job here is very important and people rely on you!  You are not your pain.  You are not your disability!!

It took me a long time to learn that I am not my headache!  That is not my identity!  Your are a special person and help many people get through the day.  God loves you the way you are.  Maybe your purpose now is to help others get through their pain, as you get through yours.

By the way, you must not get paid for your position here at HealthCentral/MyMigraineConnection or you wouldn't be able to collect SSD?  I was under the impression you had to prove that you couldn't do ANY job?

Thanks.  For everything you do!!

Susan Colorado

do not feel bad, please know that you did all that you could humanly do and you were awarded benefits justly. 

I have had chronic migraines and IBS since I was 19(I'm 57 now).  I too, have a hard time keeping a job.  My self esteem is sub zero and until I read your situation I never considered the migraines might be the reason. 

I too fell down a flight of stairs in college, bounced all the way down on my tailbone. I have had migraines since then.  I never related the two. My pain comes from the neck and radiates through my head.  Have been to numerous doctors, had my greater occipital nerve deadened (didn't work) take nerve block injections and can't even count the drugs over the years.

So Kudos to you!!

Nancy, my mom forwarded this to me as I am facing a similar situation. I have multiple health issues including migraines and fibromyalgia and others but the newest one is intracranial hypertension.  It has literally turned my world upside down as i struggle to get through the majority of days.  Recently laid off I can empathize with how you felt when you worked at the vet's office.  Once I had a razor sharp mind that was capable of lightning fast comebacks and the queen of multitasking and now I struggle to get a coherant sentence out.

At 43 I doubt my ability to work a full time job and possibly a part time job and am starting to evaluate inside if now is the time to consider disability.  Like you, I was raised with the strong work ethic so I feel guilty every time I even think about it or speak about it.  I related to what you said so well!

Your story was exactly what I needed to read and I thank you for sharing it.  You gave me hope.  I wish you all the best.

Nancy~ I really understand where you're coming from.  I was a legal secretary for over 20 years.  I lost my job six weeks ago because of migraines.  The excessive absenteeism, the inability to focus, etc.  I filed for disability as well.  It was hard for me to admit defeat to something other people routinely refer to as "headaches".  I went to the ER four times in the past year for "headaches" which required IV's and shots to get thru.  I threw up, had auras, the whole 9 yards and still do.

Being labeled disabled is a difficult thing.  I haven't won my case yet, and probably will have to appeal because the turn down rate is so high, but I do know that it's tough as hell to try to come to grips with feeling you're a cast off leech sucking human being after being active and working all of your previous life.

how does one file for disability in texas???

I really appreciate you posting of your struggles.  I know how hard it is to have to admit on some level that you are not like a normal person, so to speak.  I have numerous health issues, but have been blessed to be able to continue to work.  And I have a job that is understanding when I do have to leave because of pain.

Your story really reminds me of my mom.  We had to work hard to get her on disability.  She had numerous health issues and included cancer.  Believe it, it was still hard after the cancer came into play.  But she finally got it and it worked out for her.

She was also able to work part time as well.

Again, thank you for your posting!

Dear Nancy:

It is a very sad situation that you had to finally accept being "disabled", but I hope in the end it brings relieve and better quality of life for you and your family.  You qualify officially to experience much needed and deserved "time off" from having to TRY to work when you feel awful, trying to work while worrying about home issues/family and health, and all other "career-related" frustrations that are only exaccerbated when you never know when you are going to be "up to performing" optimally.

I also hope that your family respects you for the difficult process you endured to win the case, and that your entire family can experience less stress as a result of your not having to "force" yourself to work when it only makes you sicker. 

I wonder (and hope and pray for you) that in now living without the stress of trying to work on top of being in pain daily, you could possibly heal in some ways.  I try to stay focused on all the new research for headaches and chronic pain & the newest forms of "relief" (medical or alternative medicine) that might come to fruition within our life time.  You are certainly playing a huge role in bringing that information to all of us--thank you (and Teri) for working to keep us informed, and to keep us emotionally moving forward.

Clemmie

Thank you for sharing.  I also had a very tough time about six months ago, when I was actually labeled as 'disabled'.  It's funny how you get so frustrated with people because they can't recognize how ill you are, or in pain, or unable to do certain things you want to do....but then, after fighting SSA and maybe even friends and family members, its recognized that what you've been saying for so long is validated by others.....You feel as though you should feel satisfied, maybe even vindicated, but really its just like being kicked when you're down, eh?

Try taking a day off (and I know, you're thinking, 'I don't work, what do I have to take a day off from?').  Refuse to think about anything you feel frustrated or guilty about for an entire day (and, yes, that does mean walking right past the pile of dirty dishes), and just relax and enjoy yourself.  Spend time doing something you really enjoy without even thinking about any of the day-to day worries.  I find mini-vacations like that so very helpful.

Oh, and the best thing in my world right now is my puppy!  She doesn't care what I am able to do, she's just glad to spend time with me however able or unable I am that day.....

Hi Nancy

I completely understand your feelings.  I have worked for many years  while suffering with migraines, fibromyalgia, arthritis and herniated disc in the neck.

So many days could only be described as torture.  Plus I would have to work harder than others to compensate for the time off I had to take.  For most of the years I wasn't even properly diagnosed, only the neck problems.  It took so many years to get the complete diagnosis.

then almost 6 years ago I had an accident at work and injured my right hand, tore two ligaments and damaged the nerves.  Had surgery but was left with CRPS.  The crps triggers my previous disorders and makes everyday a trial.

I too am on disability and also feel much like you.  When someone says "she's disabled" I cringe inside.  Even after all of these years and what I feel on a daily basis, I still have trouble using that terminology.

I am grateful to have the disability support but I hate that I need it.

I guess there is a bit inside of me that still wishes that I'd wake up and not feel all that I feel.  What can we do .... as it has been said ... we play the cards we're dealt. 

Have to concentrate on what I do have and can do and not on the downside.

It is a truth that those that are truly in pain have a hard time applying for assistance ... but those that are playing a game sail right thru and know all of the ins and outs ... and of course then make it more difficult for those that really need it.

Well that's enough for now.

Good luck all.

You are not alone, Nancy, in feeling this way. I work with many disabled Veterans every day who suffer from chronic pain and feel the guilt and anguish of not being able to work any more. It is indeed a life changing thing and one that should never be looked down upon. How many times have I heard the cry "I should be able to NOT be in pain!" and feel awful that we can't really do anything to make it go away completely. At best, we get it manageable. At worst, folks are "gorked" from so much medication and still they suffer. I am so very sorry you have lost your marriage and the ability to work because it seems as though we should be able to accomodate folks who need time off for pain issues. However, in this economy it seems we are so unforgiving of anyone who isn't 100% all the time. We have a lady at work with fibromyalgia and bad shoulders from patient care (we're nurses) and she gets nothing but a ration of grief when she has to call in sick. It's so wrong. I truly feel for you and you "victory" in getting SSDI. It's not much, but at least you won't starve to death. Is there any kind of volunteering you can do and not lose it? Something to make you feel as if you are doing something, anything that's worthwhile? I suffer from migraines as well and have them about once a month, sometimes more, sometimes less, but they debilitate me. Having that kind of pain every day? Yikes...

Thank you for writing about your condition and receipt of SSD benefits.  Your article was good for me in that it was a reminder that I am not alone.  There are so many other people struggling with migraine and other debilitating conditions.  I am 60 years old and have had migraines since I was a young child.  I lost my last job in 2004 due to excessive absences caused by migraines.  I applied, not too happily, for SSD, and I was approved within a very short time.  I truly realize how fortunate I was to be approved so quickly.  Living with migraine disease and on a very limited income is a daily challenge.  Lately I have been having a bad siege of migraines and depression and frankly have been feeling sorry for myself.  Reading about the events in your life reminded me that life changes and that this cycle of migraines that I am in now will pass.  Thank you, and I wish you well.

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I knew I had to leave my job that I loved forever.......one day I just stared at a patient trying to make a retun appointment....my head hurt so bad I just couldn't think.  I too am on SS Disability.  It is a blessing a curse.......to hear someone say thy do not expect you to ever be able to return back to work.  I feel your pain and keep up with the good work!

I simply do not know why we disabled bodies feel ashamed that the money we paid into Social Security is now coming back to us as it was intended.

I am working with a 46 year old man as my co-author on a new book (I'm 65 and suffer with intractable cluster migraines for the last 12 years) who has had 15 back surgeries and is getting disabiltiy income and feels so ashamed.

JUST STOP IT!

Our financial institutions are all practically bankrupt; do they feel ashamed?  Not even those who worked for them betting on weak mortgages feel ashamed; it was just what was going on in our country at the time, and they took advantage of it, and many of us who did not know how to read the legal jargon in such contracts and didn't have the sense, and/or extra money to hire an attorney to tell them what they were signing and getting into it, now feel ashamed we've been foreclosed on.

JUST STOP IT!

Life can be Hell if we allow it; don't!

I just took myself off of Methadone, cold-turkey with little help from my pain management team until the first week of pure Hell was over and I was in a panic; but I made it.  Next cold-turkey off of Percocet.  Both of these drugs were killing me and my family since I had no life.

It's much easier being able to breathe and deal with the migraines which I have right now and have been up all night with ice packs, Linocaine, Headache Buster, more ice packs, thumb pressure on left temple and over left eyebrow, more ice packs, and guess what worked?  5 Hour Energy Decaf--2 of them.  I figured I'm up already so why not.  I used them during my withdrawals and they helped immensely.

Why?  I think it's the Taurine in them so I have ordered 120 1000MG Vegetarian Capsules of it for $15.95.  Should receive in a week, then I'll let you know how it went.

For now, it's damn the torpedoes, full steam ahead.

JUST STOP IT!

You and I earned it, every penny.

GB

pat

Thank God for your post! I had just had an extended conversation last night with a friend about just this topic, as I've been putting off applying for SSDI for a very long time, thinking I wasn't totally physically disabled, I can still walk, I am not "mentally disabled", I can still think (at least I think I can!), surely I can still work, despite having chronic debilitating migraines, chronic disabling back pain from prior injuries suffered more than 20 years ago, thyroid disease, arthritic hands, and stiff toes (I had surgery on my big toe joints to straighten my toes when I was a teen), etc., and now, as I face a divorce (husband had affair, left), a possible move, along with having to care for a young child, and elderly parents as well, I have to, finally, reluctantly, accept help from social services (as opposed to working, or family support). I completely understand what you are going through... no one can see through to the suffering we have inside when it doesn't show on the outside so easily. So many times I have struggled, agonized, while getting in and out of my car, reaching for the car brake, bending over to pick up numerous toys and dirty clothes, lugging said dirty clothes down stairs, cleaning kitty litter boxes, trying to clean anywhere doing any number of yes, back breaking chores (my injury was compression fractures in my back in two separate places), putting on my pants, taking off my clothes, etc., only to succumb to pain and tears streaming down my face in frustration that I can't do these normal, everyday things! And when the migraines hit... unless I take the meds in time, I'm down for the count, and I've lost 1, maybe 2 days, and it starts all over again. When I'm feeling fine, Yay, it's as if I've never had a migraine in my life! How soon the mind forgets... But I have to constantly remind myself... to be proactive, preventive, to avoid triggers. Everyone out there who suffers from this, I completely understand what you're going through. I know. To add other pains on top of migraines, is such a frustration. And to have others see you and think "They look fine, why can't they work normal hours?" I sometimes would just like to just get in the car and drive and not stop. (a lack of finances keeps me from doing anything drastic! plus, I know what the consequences of stupidity are, and I love my child too too much!)  I don't like to take too many meds, because they make me feel too drowsy, too drugged, and I want to maintain some control of my senses. I don't drink, smoke, or party. I just want to take care of my child the best I can, not stress over money, or our living situation, and keep my pain down to a manageable level. And maybe we can enjoy life a little? Otherwise, I am working quite hard at not working right now... trying to keep living. God Bless and Good Luck to all the others out there who suffer silently (or loudly, as it might be), we need all the help we can get, because there are those, like some others have said, that are getting a free ride when there are those who need it more, who don't feel right doing so. I have a hard time going to social services, when I feel that there are others who seem to need it more, and I do really need it. What do I do???  I am very stressed about all this, as you can tell by my rambling on and on... (also, my first comment here ever)

E

I AM CURENTLY RECEIVING SSI AND SSDI.  I AM DEALING WITH THE SAME PROBLEMS YOU ARE THE SENSE OF LOSS, THE DEPRESSION AND THE IDEA THAT MY LIFE AS I KNEW IT IS NO MORE.  GETTING HURT AND HAVING TO DEAL MWITH THE CONSTANT PAIN.  I GOT HURT ON MY JOB IN 2004 AND I AM STILL FIGHTING WITH W.C. AND SOCIAL SECURITY,WHICH BY THE WAY THEY CUT MY SSDI CHECK AND I AM EXPECTED TO LIVE OFF 500.00 A MONTH AND THIS IS WHAT I HAVE ASPIRED TO WHEN I MADE THIS AMOUNT AND MORE IN A WEEK. 

Thanks for sharing your story Nancy.

I'm so glad you wrote your post.  I'm right there with you.  I got terminated from my job of 8 years for missing too much time and having too many doctor's appointments even though I gave them all the medical documentation for everything.  I used up all my FMLA and then basically got canned for missing 3 days work.  That was in 2007.  I was unemployed all of 2008 and then finally found a beautiful job as a deaf person's relay operator.  It didn't pay alot but it was very fulfilling.  The work was with computers and scripts and of course we were on headphones all day long.  I just couldn't take it.  My migraines got worse than ever.  I ended up having to quit.  It's just so depressing.  I used to be able to balance million dollar budget sheets and data analysis and whip up a spreadsheet like nobody's business.  Now I'm lucky to speak a straight sentence.  It's like the migraines are taking my life away.  At least with you winning your SSD you can contribute to your household.  Right now I cannot work and I can't collect unemployment because my migraines aren't under control enough TO work.  Sorry for going on and on.  I'm really glad you won your case even though it took a while.  Maybe now when I sign up for mine it won't be so bad because you've paved the way!  Thank you so much!

Miss Nancy,

It's weird when "winning" also somehow translates to "losing," and it's very difficult to explain that to anyone not having gone through it. It feels like giving in to something that you've so fought with all your strength against, getting confirmation that something is so very wrong you, even when you really knew it anyway. Even when you think you've dealt with it and made peace with the pain you regularly endure, even making that first call to the Social Security office starts that emotional roller coaster to begin anew.

Your article made me cry, in a good way if that's possible, because it's difficult to find kinship in this daily pain that no one can actually see when looking at you. Thank you for sharing your story, because if nothing else it makes me feel a little less alone.

From a woman who "gave in" and started that Disability process just last week because the 20-year headache and its tag-team friend migraine turned into "intractable headaches and migraines" four years ago.

Congratulations, I guess. At least you will be receiving the compensation due you. I applied for SSDI benefits in late 2007 and was denied last June. I thought about requesting a hearing and even tried to find a lawyer, but no one would take the case because I am working part time. The receptionists said they only took cases where the plaintiff is unable to do any kind of work.

I suppose I should be grateful for my editing business, but it is not sufficient to cover all the medical expenses. Praise God for good insurance. I know I am probably in the minority, so I have much to be thankful for. 

Holly cow 12 years before you got your ssdi wow And your xhusband is missing out oh well he wasnt to much of a man not to stand by you.

Well now you have a new life over come it and continue to press on My Wife Cheryl B has now got a account here. Dealing with back and neck pain I know I had surgery on my c5 and c6 disk and possible facing another surgery for my lower back talking about life changing from being a full fledge Professional Truck driver to what I call is useless but yet needed services of a rent a cop.Big change for me and my family.

Cheryls feels like a pin cushin with these doctors. You to have a lot in common hope that in the near future we all can meet up and have some kind of refreshments Im a coffee drinker so Il bring my own Truckers Coffee. :D