As promised, here is info on SSDI for those with RA, Fibromyalgia, SLE and other Mixed Connective Tissue Disorders. Please keep in mind that this information is from personal experience as well as information directly from “Disability Evaluation Under Social Security” Manual. As previously stated in a post, I worked for years for a MD that did disability exams for the State of Virginia. The manual is intended for nationwide use. During the near 20 years that I personally assisted with the exams and prepared the supporting documentation, it was my experience that individuals that had all supporting medical documentation DID NOT NEED the assistance of an attorney, Generally speaking, you must be out of work due to your disability for 4 to 6 months before you apply. Once you are approved, you receive a lump sum check for those months out of work, and then your SSDI checks will come to you monthly. If you have minor children or children up to age 21 that are full time students, they too will receive funds each month.
1) Your GP, Rheumy, Neurologist, Cardiologist, Nephrologist and all the “ologist” you may have seen need to supply you with medical records and a precise summary of your diagnosis and treatment. If you see a Chiropractor or Massage Therapist, be sure to include their records.
2) It is imperative that you have a completed Range of Motion chart done. This chart is intended to document range of motion limitations in all major and minor joints. If your MD does not have them, usually a physical therapist will. This information is vital!!!!
3) Be sure that your MD (s) include a narrative about your limitations in relationship to your activities of daily living. For example, if you can no longer load or unload your dishwasher, vaccum your floors, walk to get your mail, etc., be sure it is documented. If ANYONE, including your partner, children, parents, neighbors, etc., help your with daily activites, tell your MD and have he/she include that information in a narrative form.
4) Keep a written or typed journal of what a day in the life of_______________ is like. For example, if you get up in the morning and it takes you 10 minutes to get out of bed because you have to roll over, wait for the pain to decrease, grab the head of your bed to pull yourself up, then sit on the side of the bed until the pain in your back and arms decrease, and then stand up and wait for your legs to stop hurting before you can limp to the bathroom and then start the struggle all over again, WRITE IT DOWN. It is so important that your doctors fully understand what your day is like. A statement like, “I have so much pain that it is hard to get up in the morning” is just not descriptive enough. Social Security needs to know that what you go through everyday is not just an inconvience but a true disability that prevents you from doing normal everyday activities.
5) Have your MD’s supply you with every copy of all lab work, xrays, MRI’s, etc. Be sure they document, for example, where your RA Factor was, where it is now and how much it has changed and how often. Also include things like reports of CBC’s, urine test, etc. Our bodies do very strange things with auto-immune disorders.
6) Document EVERY side effect of EVERY medication, even things as simple as upset stomach from too much Motrin. If you are on MTX, Prednisone, Plaquenil or other meds, includng injectables and infusions, you need to document in your journal (which you will then share with your MD) any and all side effects, even if they now seem like an everyday occurrence to you. From headaches, dizziness, rashes,blurred vision to our all time favorite, puking your guts up, write it down. If you have problem with particular joints swelling, measure them and write it down.
7) Keep a complete journal of how much or how little you are able to do without assistance. If your husband has to take a full pot of water off the stove because you can’t lift it, write it down. You need to be able to document your hobbies. Yes, they will ask about those. If you like to read, can you hold a hardback book upright? Or do you have to use a Kindle or books on tape because you can’t hold the book?
8) Don’t be shy or embarrased about your limitations. It is what it is! None of us like not being our “old selves” but when you can no longer sit at a desk for more than 10 minutes, or stand, walk, bend over, lift over 10 pounds without worrying about dropping something or falling, your MD needs to know. I believe that by and large all of us with RA or Lupus or some other auto-immune disorder, minimize what we go through on a daily basis. Putting on the happy face may help keep your spirits up, but it does nothing to make your body work or feel better. Can you drive yourself to your own doctor’s appointments or does someone have to drive you?
Now that you have gotten this far, I will tell you, it has taken me almost 4 hours to type this. That was not a complaint, just an example of the kind of thing YOU need to take notice of. If you have a “desk” job and you can only type for 3 to 5 minutes at a time before you need a break, write it down. And you nurses out there, think about how painful it is to just pump up a blood pressure cuff???? Write it down.
The point here is to help you help your MD’s who in turn can help Social Security understand how debilatating your individual disease is. You may not fit into their idea of the perfect description of a disease process. Those of us living with these kinds of diseases know how things can change so quickly. We may have a really good day, which for me is to be able to stay upright for more than an hour without having to lie down, sit down or just plan pass out.
This is also not about getting around the system. It is about getting through the system. You will find that the better armed you are with complete and honest documentation, the easier the application process will be.
I am now at hour number 5. I hope this has been of some help to at least one person.
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