My health and physical ability deterio- rated even more and the scleroderma became more active. I could no longer remain full-time in the workforce as I could not full fill the duties of the posi- tion. My doctors said it was physically causing issues with my health, and I should not have pushed it so long. SO A NEW JOURNEY BEGAN... I started the disability process recorded my progress, and was approved. The difference between SSDI and SSI SSDI - Social Security Disability Insur- ance is funded through payroll taxes. SSDI recipients are considered "insured" because they have worked for a certain number of years and have made contri- butions to the Social Security trust fund in the form of FICA Social Security taxes. SSDI candidates must be younger than 65 and have earned a certain num- ber of "work credits." After receiving SSDI for two years, a disabled person will become eligible for Medicare. SSI - Supplemental Security Income is a program that is strictly need-based, ac- cording to income and assets, and is funded by general fund taxes (not from the Social Security trust fund). SSI is called a "means-tested program," mean- ing it has nothing to do with work history, but strictly with financial need. To meet the SSI income requirements, you must have less than $2,000 in as- sets (or $3,000 for a couple) and a very limited income. I applied and have been approved for SSDI. I recommend creating a login at www.ssa.gov . You can view your earnings record, see if you qualify for SSDI and your estimated monthly payment. You can also apply online from there - I opted to make an appointment at the Social Security office and meet with a representative. Even if you do not apply online, you can login on the web- site and track the progress of your application. Here are most of the forms and instructions I received in a packet for my appointment. You can work while applying for disability as I did, but the month you apply you cannot gross more than $1310.00 per month (updated in 2021) or you will be automatically denied.

OCT 16TH. Meeting at the Social Se- curity Office. I received a packet with these forms to fill and bring the required infor- mation to the scheduled meeting. Anything regarding assets and re- sources you do not need to provide if you are applying for SSDI and not SSI. If you are signed up for MY- Chart through your clinics - it definitely speed up the process of getting the medical information you need. For my application I needed a list of the following - you can also see requirements on the forms: o Copy of my Birth Certificate. o All my doctors I see, the first ap- pointment date when I started seeing them, and the last time I had an appointment. Addresses and phone numbers for each. I provided my current diagnosis from my scleroderma specialist which I had the clinic email to me. o They also required tests, dates, and all tests required in the fu- ture. I didn’t list each one, I just put labs every 3 months, CT SCAN yearly etc. o Job history for the last 15 years (see form). o I provided my last years tax re- turn and last months paystub as requested (make sure it breaks out any vacation or sick time as they subtract that off). I did not provide any statements for as- sets as I was not applying for SSI. Did not provide my rent, food costs, or that kind of info either as that is for SSI. If they need additional information they will ask. In my case she just asked how much money I had in savings so she could note that I do not qualify for SSI and that I had been informed as such - If I had told her first that I knew I didn’t qualify and was not apply- ing for SSI I don’t think she would have even asked. My parents went with me to the meeting, mostly to help me get in and out of the chairs. We were greeted by a security guard, that has to make sure you have no weapons. Then we met with the representative who is behind a counter and glass window, with an opening to slide documenta- tion back and forth. She was very nice and helpful, I just answered her questions and gave her the docu- ments I had prepared. Before the end of the meeting, she actually looked at me and said “How do you possibly work?” The rep requested I submit this addi- tional information: all of my pay stubs from the beginning of the year show- ing vacation time used and out of pocket medical expenses. She sug- gested I do this to see if I could be qualified as disabled at least 5 months back, as disability payments don’t start until 5 months from the date they qualify you as disabled. She gave me an envelope with my case number and I submitted all the docu- ments to her 2 days later. December 18th. I was sent out three packets at the end of November of forms to fill out and submit my new case worker. Work history, and two pain questionaires, one for me and one for a friend or relative that has been involved with me to comment on the pain they see. To fill these out took approximately eight hours - I think they say it should take under an hour for each. I faxed it on the 17th and confirmed they received it on the 18th. I was given the direct extension to my case worker, and she answered on the first try. She seems very nice. December 28th. Update on the web- site: “Disability Determination Decision Under Review. Your benefit application is currently under review for processing accuracy. Once the review is complete, we will continue processing your benefit application.” January 15th. Update on web- site” “A medical decision has been made and we are working to process your benefit application.” January 23rd - I HAVE BEEN APPROVED! I provided my last two pay stubs as requested to our local office. My case worker process them and I was ap- proved by the end of the day. I was able to access my letter with the specifics of my approval the next day on line with my benefit amount and payment schedule. I will start recieving benefits next month - Feb.

MY CONDITION AT DATE OF APPLICATION So here is the condition I am in starting the process: (I plan to provide more de- tail with pictures). I am not providing this information for sympathy, but for determining qualification for Disability. • I have had Diffuse system sclerosis for over 10 years, and have been taking methotrexate for over nine years. Actual diagnosis from the scle- roderma clinic: o Systemic sclerosis (H) Lung disease with systemic scle- rosis (H) Raynaud's disease without gangrene Encounter for long-term current use of medication Calcinosis cutis Calcinosis High risk medications (not antico- agulants) long-term use • My hands have severe contractors, calcinosis, raynauds, and impaired blood vessels. I have limited use of only three fingers on each hand. Any bumps, cuts, calcinosis flair ups, etc are very serious especially if infection results, and are subject to amputation. • All of my tendons are thick, tight and brittle. My skin involvement is in- creasing in thickness again. My knees have limited bending and movement, as well as my toes, ankles, arms/elbows and shoulders. My hips and back are now also affected. • I don’t have severe indigestion, but am not able to eat very much and become full very quickly. I am unable to digest most meats and a lot of vegetables are hard too. My mouth is so small and tight it is pushing my teeth in. Chewing is very hard and my jaw becomes painful in a hurry. I now weigh 96 pounds and am over 5’4”. • What does that amount to in daily living: o I can no longer dress myself. o I cannot shower myself/ com- pletely and effectively on my own. o I can’t bend enough to pick up anything that is not at least 1.5 feet off the floor. I have a grabber, but with my hands it is hard to use, and I can only pick up light items. o I can’t cut food by myself, remove cold items from the fridge, very limited on food preparation (thank goodness for microwaveable mac & cheese!). o I need assistance get up from most chairs and to get out of bed. Sitting for long periods is very painful. Cannot stand for very long, cannot walk long distances. I have to go up steps sideways one foot at a time while trying to hold on to a railing. o Driving/riding: very difficult to get in and out of vehicles. Since I can’t grasp the steering wheel and my arms and shoulders are weak and have such limited movement, it is hard to turn the steering wheel. I no longer drive on the highway, only in town. o A lot of pain and I tire easily, sometimes to the point of com- plete physical exhaustion.

EXAMPLES OF HOW I FILLED OUT FORMS: Pain Questionaire-Applicant Pain Questionaire-Others Job History

DISABILITY and SCLERODERMA