lung damage

[Guest guest]

Tracie, that is a very good explanation of the lung damage with sarcoidosis and ways to counteract it. Thank you.

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: DISABLE BENFITSDate: Mon, 17 Apr 2006 18:32:42 EDT

THIS VERY HARD FOR ME IVE BEEN WORKING FOR 20YEARS TWO JOBS . WHAT IS SSA VS SSI PLEASE HELP MEMany of us have lost jobs, professions, careers and relationships. It is all painful--emotionally. It is hard to surrender to the fact that you won't be working, but in order to get better--rest, staying away from as much stress as you can, eating right, controlling your pain so that you can sleep--are all so very important in getting this disease into remission, or even under control.SSA is Social Security that you draw when you turn 62 or 65. SSI or SSDI-- (same thing) is for people that have been off work for one year or more. It is Social Security Disability Insurance. You must have worked for 40 quarters (10 years) to qualify, and you start the application process at the 6 month of being off work. It will take between 6 months to a year or more to get your SSDI approved--usually. Until then, you should be able to pull off your State Disability Insurance for the 1st 12 months. Depending on where you work, your job may have a Short-term disability program that will supplement your State Disability. (Some states don't offer State Disability, so most employers have a private short-term disability.) What SSDI does is it looks at what you're making now, and what you've made over the last 3 quarters, and figures your income from there. It is 25% of your current wages-- so be aware of that. After you've been off work for 2 years, then Medicare kicks in--so you'll have that for health coverage. Is your pulmonologist putting you on oxygen to help with the low lung volumes. What is your diffusion rates? What does your oxygen saturation drop to when you're walking or even sitting and talking with friends. I too have only 56% lung volume--and my saturation drops to 91% when I exercise or even go grocery shopping. I use supplemental oxygen part of the time, and have it with me always. At night I have both a cpap machine for sleep apnea, but my sats drop to the 80%--so it's oxygen on all night also.Part of the problem with our lungs being at such low volume--is that we get alot of "air trapping"-- where the air we breath in can't cross the lungs because of the scarring from the sarcoidosis. Since it can't get across, it isn't picked up by red blood cells to go out thru our bodies. We experience shortness of breath, along with numbness and tingling in our extremities. In order to get better oxygenation out to our body-- we need to really focus on exhaling as much air as we can, then take in a good long in-breathe. What this does is make it so that we don't have that old stale air hanging in the scarred tissue, causing us to hyperventilate due to the carbon dioxide effect. So really focus on the exhalation--and see if that seems to help. Sincerely,TracieNS Co-owner/moderator ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database