Best Advice I
Can Give
You may not think now that you might ever have to take the plunge on trying for disability with either of these diseases, but as most that have come before us can tell you, they didn't either.
After listening, reading message boards, and from my own experience here are some things that all of us should start doing as soon as we see that we are not improving, but in fact getting worse.
1. Daily Journals-Everyday, your pain, use the pain scale 1-10. What you couldn't do today that you usually can do, etc. Depression and how it made you feel today, anything pertinent to your health.
2. Always take a list of your problems with you to the Doctor, and make sure it goes in your file. This shows that you are having problems at your doctors visits and what they are. Make a copy for yourself too.
3. Have your Doctors office make you a copy of each visit of your record when you go to keep in your file at home. Also get a copy of your lab reports etc.
4. Sick days and time off from work because of sickness, keep a calendar of why you were not at work and why, put down on there what was wrong, fibro? HS? Both? Other Illness?
5. Take pictures of your HS outbreaks. I know that sometimes this is hard to do, especially in those hard to see places, but, a husband, special someone, a close friend, a child, can take those pictures for you if you can not. Explain why. This is evidence for Social Security, and you will be glad you did. I have heard of several cases that were won on pictures, not saying that was all, but it sure didn't hurt. Make sure you date the pictures too.
6. Let your friends and family and co-workers and anyone know how bad you are, this is good for when you need someone to fill out those forms for you. You don't have to complain all the time, but let them know that you are not all smiles, and you do have a real disease.
7. Learn to say NO to those things that are not important. I used to be the Girl Scout Leader, the Boy Scout Leader, Headed up the American Cancer Drive in my Community, was a Substitute Teacher, was a Softball Coach for my daughter, was a basketball coach for my daughter and son along with my husband. Well it was to much. I made some people mad when I had to give some things up, but they either got over it or I moved on, and those that didn't move on with me were not friends to begin with I found out.
*****8. If you are working and would like to continue to work get your FMLA papers filled out. Do Not Wait!!! You need FMLA if you work and have a chronic health condition of any kind that you have to miss work for. Please read the Federal FMLA guidelines and then read your State Guidelines.
*****9. See your Doctors on a regular basis, most disability lawyers say at the least once every 3 months some say at least once every 2 months, this shows that you are in pain, need medicines, have a problem to deal with on a regular basis.
I am having the paper filled out where I can have intermitent time off when it is unexpected, or if it is where I can give them notice I will. Please do not wait, I have almost waited to long.
I still have not been saying NO enough but in the last 4 months I have really been learning how. And now I am saying NO and sticking to my guns. If I see I can't do it, or it is going to cause me undo stress, then I don't do it. By my saying No is not to hurt feelings, but it is for my own good. Noone else has to live for the next 3 days to 3 weeks in the pain I have to because I pushed myself. Those around us must learn to be adults, and understand it is not because we do not want to, but because we can't.
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