My Story:
Filing for Social Security Disability Income (SSDI)

to Lean On Me

When I first became ill, my symptoms began one at a time, adding a new one every few days until I finally just barely could get out of bed to go to work. I was a newlywed, only married 2 months when I began to have a constant headache. My neck, back, legs, arms and hands hurt constantly. I used to go to the ladies' room at work and run straight hot water over my hands just to relieve the pain for a while so I could return to my desk and write on more case files. My ankles seemed a little shakier than they ever had, so I quit wearing my heels and wore flats every day. Gradually, I noticed that I was totally exhausted after work and had to lay down immediately when I got home for about an hour or so before I could function well enough to cook dinner for my husband and daughters. The fatigue continued to get worse, until I was getting exhausted before I left work, and became concerned that I would have enough energy for the drive home. My other symptoms never abated, and only seemed to worsen by the day. I saw my doctor for the pain, and he prescribed a muscle relaxer to help ease the tension and knots that had cropped up on my back and shoulders. This didn't work.

After this continuing for another month, I started feeling a tingly sensation in different parts of my body. Kind of like when your leg "goes to sleep". It would last for minutes, hours, or a couple of days. Sometimes it would be in more than one place at the same time. The shaky ankles soon turned into shaky legs! I noticed when I was still, like trying to fall asleep or sitting down working or watching television, that it felt like I had little nerves "jumping" in my legs or arms. I lost my grip and couldn't open jars or pop bottles with the screw on lids. It was a weird kind of weakness that gradually got worse. The little nerves jumping turned into some noticeable twitching occasionally. I used to be amused when I would look at a muscle or nerve twitch under my skin, but this just wasn't very amusing at all. It never quit, and it was invisible! I could feel the twitching, but it was down deep and I couldn't see it. I no longer could take the 2 flights of stairs up to my office, and had to use the elevator. Insomnia had set in. It was so extreme that I was only sleeping about 2-4 hours a night, and I was just as exhausted afterward that I was when I went to bed. Even though my fatigue was extreme, I still couldn't sleep!

Finally, within 2 more months, I had an episode at work while on break where I started jerking violently on one side of my body, like I was having a seizure. But this wasn't like a typical seizure because I could talk coherently and didn't lose consciousness. An ambulance was called, and the paramedics were baffled. My vital signs were good, except that my heart was racing because I was scared. Because it was State Fair time, the ER's had an average of 6 hours waiting to be seen, so the paramedics suggested someone drive me directly to my doctor's office so I could get medical attention immediately. When I arrived, my doctor just stared at me for a few minutes (mouth open) and then got busy. He gave me an injection of valium directly into my vein or artery (I don't remember which) and that made the jerking stop. We discussed what could be wrong. I'd been seeing this particular doctor since 1978, and this was October of 1995, so he knew my medical history very well, and I knew he was an excellent doctor and trusted his judgment.

His first course of action was to order a round of tests to--as he put it--rule out the really bad stuff first. A brain MRI, an EEG, an Evoked Potentials test, and blood work was done. Naturally, everything came back abnormal, but not enough to make a definitive diagnosis. I didn't return to work after that day and went out on temporary short term disability until we could come up with something. He referred me to a neurologist (I'm sorry, and I don't mean to offend anyone, but these guys are the strangest breed of doctors I've ever had contact with!!) The one lesion on my brain wasn't enough to give me a full, definitive diagnosis of Multiple Sclerosis. ( I was reminded by the neurologist that multiple means at least 3, not only 1, and only 1 wasn't enough damage to cause my symptoms! Yet I had them!!!)

The EEG was abnormal, showing that I had "sleep spikes" but I never went to sleep during that test. I was awake the entire time. So why in the heck was I getting signals in my brain that I was sleeping?? Of course, no neurologist could explain that one. The Evoked Potentials test showed that I did have some eye jerking in my left eye, but of course, the neurologist didn't think it was enough to signal a real problem.

So, after all the frustration with my symptoms, and all the panic that set in because I had no idea what was happening to me, I got extremely depressed. The depression worsened when I kept getting no answers from medical professionals. By the time I saw the neurologist, he had just decided that my test results didn't add up to much, and I was suffering from a severe case of depression! Well, that made me so angry that I yelled at him that if he had woken up one day and couldn't control his body, he'd be depressed too! Thankfully, though, my own PCP knew me well enough to know there was no history of that, nor was I predisposed to it. After all, I was the happiest I had ever been after just having married the love of my life a few short months before. There was no reason for the depression but for the physical symptoms, which developed way before the depression set in.

I stayed off work until the following January, still with no firm diagnosis. I was so proud of myself that I made it through my first 8 hour work day! But the next morning when I woke up, I couldn't feel my legs. So, I had to call in sick the 2nd day back on the job. Thanks to the Family Medical Leave Act that was passed under President Bill Clinton, I had up to 13 weeks of time to take off throughout the year. So I tried working as much as possible. I never made it all the way through a complete 8 hour day again after that. I had missed so much work in 1996, that I had run out of those 13 weeks already by April 25th that year. I had to go out on permanent disability. Later that year in July, I applied to SSDI for my disability benefits. By September that year, I had an approval, and a retroactive check back to October the year before, as that was the onset of my disability.

What I have compiled below is a list of the things I submitted with my application to SSDI department. I filled out their application form, but added extra information to document my symptoms and experience in trying to work. I suggest that everyone who needs to be on SSDI read this and try to do the same things that I did, if at all possible. It couldn't hurt, and after working on claims for a large insurance company for many years, I can tell you that the best documented cases get approved quicker than ones that have missing information or not a clear picture of what is actually going on.

Tips For Documenting Your Symptoms/Illness

  1. Begin a journal in which you record daily all your symptoms, and even mention what you were able to do that day or what you were not able to do that day. This helps SSDI see how you function on a daily basis, and also provides your physician some insight as to what symptoms you are having so that he can address and treat those.

  2. Keep a detailed calendar of hours/days that you are able to work. Do this as soon as you realize that things just aren't quite right and you are beginning to miss work because your health prohibits it. Just a regular calendar that shows 1 month at a time with all the days on it. On each square, write down the hours you actually worked. If at all possible, please try to work at least some. Don't just quit working one day and never try to go back, because it looks like you aren't interested in earning your own income. Of course, if it's not possible, then you can't. But if you can, please at least try.

  3. Do whatever your doctor recommends and try whatever treatments he suggests, too. This shows that you are willing to get better, at any cost. SSDI is naturally concerned about fraudulent claims, so you have to show that you really want to be a productive working citizen and really want to be well. They are more skeptical of people who seem to be looking for an excuse to get out of work or looking for a free ride.

  4. Cooperate with SSDI if and when they require you to see their doctors. If they are the ones requesting that you get examined by some doctor chosen by them, you do not pay the bill. It is part of their claim file routine, and all medical fees are paid by them. Show up for the appointments they make for you. Be yourself. Be honest. Remember, they are only looking for fraud.

  5. Be sure to sign all the medical records authorizations so SSDI can get your records from every doctor that has seen or treated you regarding your illness. It is a very good idea, if at all possible, to be seen by your regular PCP that you have been seeing for years (that is, of course, if you have one who knows your medical history well). This will document for you when the onset actually occurred, and how long your symptoms have been going on. If you don't have a PCP that you've been seeing regularly for check ups or the flu, etc., then do the best you can.

  6. Fill out completely and honestly the formal SSDI application forms. You can download a Disability Starter Kit from their website and print it off to get you started. Be as detailed as possible when answering the questions, and add additional paper to finish an answer if they don't provide enough space for you. Accurate details are key.

  7. Photocopy your journal and your work hours calendar, and submit it along with your SSDI application the very first time you send it in. I also recommend that you photocopy all your application paperwork so you also have a record of what you gave them. Sometimes, an SSDI claim approver will call and ask questions about specific answers, and it's convenient to have a copy in your hands for easy reference. You need to understand exactly what they are asking, and also what you told them.

  8. Contact Social Security Administration office as soon as possible when you discover you can no longer work. It takes at least 6 months before you can receive your first cash benefit---the longer you wait, the longer it will take to get some financial relief.

  9. If you visit or call the SSA in your town, try to visit or call during the least busy time of their day. Mondays are usually one of their worst days, and around the lunch hour, or middle of the day is also busy.

  10. Try to always have your medical information in front of you when you are talking with the SSA. Keep a list available that includes: names, addresses, and phone/fax numbers of your medical professionals; medical records, if you can get them from your physicians; your Social Security number; any and all documents you have that show any test results, diagnoses, etc.

  11. Concentrate on the negative aspects of your illness while completing your application, discussing your case on the phone with the SSA, etc. Always keep the symptoms in mind that make it impossible for you to keep gainful employment.

  12. Document unsuccessful work attempts, like I discussed above on your work hour calendar. If you have to change jobs, keep records of when you started each job, when you had to leave, why you left (especially if you were fired because of your illness/symptoms), trouble you have getting hired because of your illness, etc. Any written documentation to support your claim is advantageous, however, a journal of notes written by you is also helpful.

  13. Don't give up if you are denied the first time you apply. It isn't always necessary to hire an attorney to get your SSDI benefits awarded to you. Even with an attorney, you can be turned down, so hiring one may not be necessary, and trying to do this yourself first (if you can) could save you money in the long run.

  14. Always keep the SSA office informed of any address or telephone number changes. You want them to be able to contact you regarding your claim!

I hope these tips help you. If you have any questions for me regarding this information, or need some clarity, please feel free to email me personally, and I'll get back to you as soon as possible with an answer.

Good luck, and God bless you!

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