The third time is NOT the charm

As you've probably guessed by the title, I was turned down a 3rd time for disability and SSI. I can't tell you how disappointed and devastated I was when I got the letter. I really thought that that hearing was going to be my breakthrough, but it all came down to the lack of recent medical evidence. My most recent exam was one that SSA sent me to in January 2003, shortly after I moved here to Oklahoma.

I made some phone calls, and I may be able to qualify for some research projects for both my FMS and the RA. That may give me the medical evidence I need to get benefits. Meanwhile, I have decided to reapply for both disability and SSI in hopes that SSA will send me for an exam at their expense.

I have also decided that I must get out of Oklahoma. I will find the money somehow to get out of this state. I cannot get state benefits unless I am already on disability (which is stupid, why would I need state benefits when SSA benefits pay more? Even the man I spoke to at SSA said that!). Oklahoma does not have a program that provides temporary monetary support for those people who find themselves unable to work, like they had in Massachusetts. In that regard, Oklahoma is truly a backwards state. Where I'd go, I have no clue. I want to go back to New England, but where I'd stay once I got there, I don't know.

I'm in a lot of pain right now, mental, emotional and physical. This will be the death of me yet... I have to get out of here!

--MorelaterZ--

SSA doesn't care if I'm broke

...I still have to wait for the results of my hearing like everyone else.

When I called SSA today, their primary computer system was down. All the rep could tell me is if my case was still open or not. It's still open (but I knew that). I told her that when I called a month ago, my case was with the decision writer. She told me that some judges stake up to six months to make decisions. Well, if it's with the decision writer, I asked her, wouldn't it make sense that the judge has already made his decision? She had no answer for that.

I'm still going to call back next week. I gotta get some real answers somewhere.

--MorelaterZ--

Okay, it's this:

Subject: 1.01 What is CFS?
(text from cfs-news.org. Text in bold is mine, as well as the comments.)

Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV). (Stef: Well, damn, they make it sound much worse with that name!)

The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.

The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.

Something interesting I found by chance

I was looking over the referers from one of my other blogs and was led to globeofblogs.com. Someone was looking under the letter "M" and ran across ~*Mi Vida Loca*~. I clicked on the link that was left on my referers list and took a look at some of the other blogs listed there, and saw this one. It's by a man in Great Britian that has CFS, so I went to his blog to see what he had to say. One of the links on his blog led here, though I couldn't find anything to explain was "ME" was. Since it was paired with CFS, I wonder if it's fibromyalgia known by another name. The symptoms are similar to FMS and CFS. I intend to search further to see what the real story here is.

--MorelaterZ--

The waiting is the hardest part

I'm getting ready to go to bed. I've been extremely fatigued, sleeping during the day for two and three hours at a time. But, a new wrinkle has appeared: I actually get to bed at a decent hour, but get up two and three times a night to pee. I've haven't had to pee this much since the carnival, so I think it's nerves. God knows that the stress level around here is in the red, so my nerves are shot.

ANd my constant companion, the all-over pain, is still driving me up the proverbial wall. Today, I was holding a glass of ice water in my hand and I could feel the pain in my hands start up. It seemingly went from my hands, up my arms, down thru my torso, all the way down to my feet! All from holding a glass of cold water!

Still nothing from SSA. The end of the month is in two weeks. Please, Lord, let me hear some good news! It's been much too long-- it'll be two years in September since I applied for Disability and SSI, and if I have to go thru this all over again, I think I might cry. The idea of having to go back to work, then not being able to perform, scares the crap out of me. I've always prided myself for being a hard worker, being a reliable employee, and not being able to keep up because of the pain and fatigue, saddens me. What happened to my old predictable life? The only good thing about not being able to work is that I was able to go to the carnival that day in July two years ago and meet my Cajun. He's been supportive and understanding of all this, even if he doesn't understand the whys and hows of it. It's hard to do that from 800 miles away, but it's the way it has to be for now.

--MorelaterZ--

*sigh*

I've been in a great deal of pain today. My right arm is sore for no reason that I can figure out. I'm still sleeping way too much, and I've been down in the dumper all weekend, again for no reason that I can see. That may be for a myriad of reasons ranging from the fact that my son is going off to college to my mother's dramatics to unresolved personal issues...or something else that I haven't considered.

Still having the all over pain, some days worse than others, but still there nonetheless. Not even Tylenol helps it subside for even a little while. The last day I felt good was May 21st, the day of my college-bound son's HS graduation. Today is definitely worse than last week, for example.

I still haven't heard about Disability. I can't call again until the end of the month if I haven't heard by then. I don't know what I will do if I don't get it again this time. Reapply, I guess. I get so discouraged about it, that I need the money to see doctors so I can maybe someday go back to work. I want to work, I just can't right now. I need to see doctors, but I can't work. It's a catch 22...and I'm suffering for it.

--MorelaterZ--