You go to the mailbox everyday expecting to see the usual suspects, bills, junk mail, maybe the occasional hand written letter from a friend or a card for an upcoming birthday or anniversary and for those of us lucky enough to be on disability we face the Dreaded Envelope on year 1, 3, 5, 7 and 10 of our benefits. The sight of this envelope in your mailbox will instantly send the hairs on the back of your neck to stand on end, cold sweat begins to pour down your temples and your palms are clammy as you open it right at the mailbox.
"This is your regularly scheduled check in by the Social Security Disability Office to see if there have been any changes to your benefits status since the last time you reported in with us." The lump forms in your throat and your heart starts to beat rapidly. You know full well that you haven't done anything wrong, you haven't broken any of the rules of your disability contract/status but you still get very nervous every time you get this letter because you know that if they don't like your answers they can start an entire investigation into your health records, interviews with your doctors and caregivers about what has transpired over the past three years and they can then alter or completely remove your benefits if they think that you no longer qualify for disability.
You can see why it is terrifying to receive this envelope in the mail and we dread its arrival. I just got my 7 year letter and I sent in my review questionnaire. They ask you questions like, "Have you worked and brought in any income over what you receive from your disability income in the past 12 months? If yes, please fill in how much money did you make in the past 12 months? Are you enrolled in any educational programs right now? College or trade schools? Has your doctor told you that you are capable of returning to work even on a part time or light duty basis? Are you interested in returning to work? We have assistance programs to help reintegrate you to the work force if you need assistance, please contact us." Blahblahblah.....
However, you have to be so careful about how you word things if you are going to say "yes" to any of their questions. My disability attorney told me long ago that before I EVER intended to return to work, I was to notify him. He would contact the Disability Office and inform them that I was "attempting" a return to work on a "trial basis" to see if I could tolerate a few hours a day (no matter how good I was feeling) leaving the door open for me to back out of work and get back on full benefits if I could not sustain holding down a job due to my health. I had a GREAT attorney and we got disability the first time through which is rare in Chronic Lyme Disease cases.
So, my case is pretty straightforward because I have actually gotten WORSE in the past 3 years so it was easy to fill out. I have not worked for 7 years, I have not brought in any extra income and I have been bedridden for most of this time. I went from just having Chronic Lyme Disease to now having Lyme, POTS, I had a hip surgery, now I need a left shoulder surgery, my vision is messed up, my teeth are rotting thanks to the meds, I have an inflammed elbow, my skin is a mess and I have the worst arthritis in my knees that you can hear them grinding from across the room when I try to stand. This disease has ravaged my body so when I fill out this form it is easy for me to tell the truth that I am a freakin' MESS!!! But, we still worry what the outcome will be.
I got my return letter from the government just a few days ago and just like in years 1, 3 and 5 it said, "We WERE going to check into your status but after reviewing your questionnaire we feel it is unnecessary to take any further action at this time. Your benefits will continue as usual until your next evaluation is due." HALLELUJAH!!!!! One more behind me. Here is the kicker, I should only have one more to go and then I will be classified as permanently disabled and I will no longer have to receive the Dreaded Envelope.
People probably wonder why I am celebrating the fact that I am on disability or that my disability will continue and why shouldn't I be wishing to go back to work instead? Anyone who thinks like that about me hasn't read a damn thing in this blog and knows nothing about me in this instance. If they did, they would know that for 35 years of my life I busted my a$$ getting an education, helping others in my community, taking care of my parents, owning and maintaining my own home, paying all of my own bills and overall being a Type-A, go-getter who never stopped. That ended in the blink of an eye with the bite of a single tick.
Now I am just trying to survive. I hurt all over, all the time. I cannot walk to my own kitchen in a three bedroom condo without heart palpitations. I can no longer shower, it is too exhausting and makes me short of breath. I can no longer drive because I pass out too easily and for the safety of other people on the road I have chosen to stop driving. Not to mention, my vision has deteriorated so much that the eye doctor said I wasn't safe to drive without glasses anymore. I cannot even get through an entire meal sitting up in a chair without my heart rate going so fast that I get hot, nauseous and have to go lie down because the heart condition (POTS) has now made me completely lose my appetite so I have to eat lying flat in my bed. The list of limitations is endless.
Would I rather be working and have my old life back? What in the hell do you think? OF COURSE I WOULD!!!! However, this is the hand that I have been dealt and I am going to be damn well grateful for every disability penny that I am given. I know that over time I will likely receive more than I ever paid into the program but for all of those millionaires helping me out, I thank you. In all honesty, no one should have to bear the cross I am carrying so if anyone complains about people who are on disability they can always come and take my place in this bed of horror and pain and I will go take their place in society where I can have a normal life again. That is all I have to say about that.
So, I am free of the magnifying glass for another three years and I couldn't feel any better. It is hard enough to fight for your life every day but when you are also fighting the system that sustains the roof over your head, food in your mouth, medicine that you can get, health insurance that you have and all money that you get every month it is an enormous burden to carry that you do not accidentally do something to jeopardize your benefits. It feels awful to be dependent on some other entity to provide for you when you have always been able to take care of yourself by your own sheer willingness to work hard. I am grateful and yet I remain terrified that a letter will come someday that says they are taking away my benefits. I think we all feel that way.
I am hoping for that 10 year mark that I will receive a letter that says, "We will no longer be sending reviews and your investigation is closed. We have determined that your illness is not likely to improve in your lifetime and therefore we are classifying you as permanently disabled. You will have benefits for the remainder of your natural life with no further interruptions by this office." I would possibly pass out just from reading those words! Ha!
It remains to be seen what happens in the future but I remember sitting at my corner desk, seven years ago, filling out the original paperwork for disability and not realizing what I was getting myself into. I was one of the lucky ones. I filed in November of 2011 and on March 3rd, 2012 -- a Saturday mind you -- they called me on the telephone to tell me that my benefits were granted. They were even so worried about my cognitive function at the time that they wanted to assign me someone to handle my finances!!! I told them that as long as I did the bills in total silence I was doing just fine and I had my mother to check my work before I sent anything out so I was all set in that department. I didn't want disability all up in my personal financial business on a regular basis. I was so excited that I got it right away that I still have the voice recording saved on my cell phone! It just goes to show you how sick I really was when I presented my case. I had also gone 5 months with no pay so I was getting pretty desperate for anything to start coming in at that point.
I will do a post very soon on the process of filing for disability, getting a lawyer, the paperwork process, denials, what to expect if you get approved, medicare and disability over the years so those of you who are beginning the process can benefit from what I went through during the process. One pearl of wisdom to get you started on that post is:
* Start collecting ALL of your medical records from EVERY doctor you ever went to for your Chronic Lyme Disease (all consults while you were searching for a diagnosis, all labs, imaging, procedure notes, office notes, surgery notes, get EVERYTHING) even if it costs you money to get the records it will be worth the hassle in the future. You are going to create your own medical file to keep at home with you. Then when you see a new doctor and they want records, you roll in with your rolly bag that has your files in order and you say, "What results are you looking for doc? I have them all right here." Doing this has saved me more time, energy and money than you can ever imagine. Not to mention, you are providing the doctor with the proper results instead of depending on the other doctor's office to not make a mistake which only delays your care.
Get started with that and I will have many other tips in my "How to file for disability and WIN!" post that will be coming soon (if the elbow allows, remember??). In the end, the Dreaded Envelope doesn't have to be dreaded afterall. Sometimes, like yesterday, the news can be perfectly fine and even cause you to heave a sigh of relief that you have three more years of benefits with peace and quiet from the Social Security Office. The moral of the story is: Don't panic just because the Disability Office reaches out to you. Sometimes the hand dealt to you is a full house and all you really need in life is a full house right?