Don't be sorry for asking questions! That is why we are here. We want to be here so people can know not only of our disease but of our experiences.
Originally Posted by SouthFLWahine
I had worked my entire life and I had always been insured through my jobs. I was one of those people that seldom went to the doctor because I complained about the co-pay (LOL) but I hadn't known life without a job and insurance in most of my adult life. Turns out this was going to be a negative for me when I got sick.
When I first started feeling bad I didn't go to the doctor. I kept thinking I was just getting older (was getting close to 40) and that I was falling apart. Soon things were happening that I couldn't ignore. I was diagnosed with SCLE Lupus ( Basically Lupus that doesn't affect the organs) but we knew my brain and memory was really being hurt. I worked in the real estate/legal field so it was not a good thing! Things came to a screetching halt the day I had a tonic clonic (formerly known as grand mal) seizure in my office and was carried out in an ambulance. Turns out I had been having seizures for awhile but I just didn't know what to look for, but I digress
The day I left in that ambulance was the last day that I was allowed to work. My insurance was tied with my job. I had paid for short term and long term disability which I thought would help me. Short term did. Long term isn't worth anything unless you are willing to get an attorney to help you fight for it but that is another thread. When my short term disability at my job ended (about 3 months) I received a letter from my job stating that if I didn't return to my job by such and such date they would assume that as my desire to no longer work there (even though my doctor wouldn't let me work I couldn't afford all the testing that they were requiring me to have done to approve me on the long term disability). Well, such and such day came (July 2 2009) I lost my job and my insurance. I had already started the paperwork for my disability and was actually approved on only my 2nd try which is pretty good (means that my daughter and I lived on $300 a month for only 5 months).
Problem is that when you have worked your whole life in the US and you become ill you apply for your Social Security Disability (SSDI). When you haven't worked 40 Quarters (10 years) you apply for SSI. SSDI requires that you wait 2 1/2 years before you can get your medicare which is what I have been doing. I was getting the money part of my disability (which isn't much) but I had to wait the time to get the insurance part. If I hadn't worked I would have gotten the SSI and I would have had Medicaid and it would have started right away.
Much of the health care issues are handled in the states and in Texas they are handled county by county. I am in a county that has no help. I have learned the system is completely broken. Had you asked me back when I was a middle class, working, insured, healthy, conservative I would have given you a different answer but I have seen the other side of our health care system now and I promise you that it is broken. When someone has to go without healthcare for 2 1/2 years and continue to get more ill because they can't afford meds in a country like this there is something wrong
*hops off my soap box*
Your'e absolutely right-healthcare in the US is a disgrace!
I hope whoever wins this next election takes healthcare seriously.
Luckily I have very good insurance-I belong to a trade union which administers my pension and insurances.
However if I were to get laid-off or fired my insurance would last between 3-6 months before I would have to start paying cobra.
Cobra is very expensive-so it really isn't a long term option.
Thanks for the run-down about SSID/SSI...especially since I'm seriously considering applying myself. I too am a single mother, on the verge of 40, that attempted to ignore my symptoms and now I'm in the hurt locker...so to speak. As previously stated, I'm fortunate enough to have stellar health insurance (which, thankfully, isn't tied to my job) and reading a story like yours just makes me thankful that my situation isn't worse!! You're an inspration :)
Applause, applause Mari!
I'm lucky that I'm insured through my husband's employer, but I get on the same soapbox.
So many people in this country are one hospitalization away from bankruptcy, and it is simply not right.
My neighbor was hospitalized in May for eight days. He drives a cab for a living, so he didn't make any money and got behind.
In June, the rent went up by $200/month. By late August, the poor guy was so behind that he was evicted from the home that he had lived in for ten years.
He managed to find a new place, but couldn't move in for two weeks. He was sleeping in his cab most nights, or getting a motel room on the weekend when he had his little girl. I kept his little dog for those two weeks so that Brownie wouldn't have to stay in the car all that time.
It just isn't right for hard-working people to lose everything because of an illness. Healthcare should be a human right.
Stepping off of Mari's soapbox.