How I feel: like I've been beaten up everyday for the last 15 years

And that's how I feel right now.

It seems that everyone in my family believes that I am faking FMS. My sister has actually come out and said this to my face, about how I'm using it as an excuse not to get a job. One, there are no jobs for me here! Two, I couldn't fake this even if I wanted to, because before I was diagnosed two years ago, I hadn't even heard of Fibromyalgia! All I knew is that I was (and still am) in a lot of pain and fatigued beyond belief. And my sister is a doctor (though not one who treats patients with FMS)!

I reapplied to SSA for disability and SSI. But, I think I will really have to leave Oklahoma before I can get any assistance. If I stay, my only alternative is to find a job, and I already know that I can't work. But still, I look for work, but it seems to be a fruitless exercise. The job market here is a joke. And my FMS seems to be getting worse the longer I don't see a doctor for treatment. Kinda hard to see a doctor when you have no income, and the agencies that are supposed to help you won't because you're not already on disability! All they do is make excuses and suggestions.

It was a huge mistake to come here. Had I just done a little homework before I left Massachusetts, maybe I would have found this stuff out before I got here, and therefore not come at all. But if I had stayed there, I would have been homeless, as I was being evicted from my apartment because I could no longer afford the rent.

No one here in Oklahoma, not my family, nor the state, nor SSA, understands that though. No wonder my hair is turning grey at a rapid rate!

--MorelaterZ--

This heat will kill me...

It was 97 degrees here in Edmond, Oklahoma today. Hot and dry...and it's this kind of weather that really wipes me out. I don't even have to do anything. Today, I went to the store, took my son Jeff to the mall, and got gas for the van... now I'm achin' something awful. My hands, feet, wrists, and ankles are killin' me, and the rest of my body feels like one big bruise.
 
And, I'm tired beyond belief...but do ya think I can sleep? Helllll, no!  I've gone to bed at something like 4am all this week. The headache is driving me insane!
 
Tomorrow, it may get to triple digits. God help me! And I have to go out in this because my mom has a dentist appointment tomorrow afternoon...
 
Oh.  Joy.
 
--MorelaterZ--

Sleepless

It's baaaack!

I can't make myself sleep at the proper times, and it's because I'm in a great deal of pain. I took the Tylenol PM, so I was able to sleep, but now I'm still tired and dragged out. It doesn't help that it's hot outside, and that I'm still under a great deal stress.

I'm looking into trying to see doctors for free or low cost. I sent in my paperwork to reapply for disability and SSI. I need to get out of Oklahoma, because I will never get benefits here.

I feel the depression creeping back up on me. I can't live this way anymore.

Let me tell you how tired I was yesterday...

I was so tired, so fatigued, that I fell asleep sitting up while I was online...in the middle of the afternoon!!

My sister came over with Amalia yesterday, and I had no clue...because I'm asleep while they were there...

WTF???

I need to get some medical attention for this, especially since I have reapplied for disability and SSI. And the constant pain is more than I can bear on a daily basis. OTC pain relievers are not enough to combat the pain. Last night , I took the Tylenol PM for only the third time since I bought it several months ago. Usually, I'm so exhausted that I fall asleep as soon as I'm not moving for more than five minutes. In the car, I keep the radio turned up loud just to keep me awake long enought to get from point A to point B. Scary!

Help! If anyone knows of a specialist that will see me for free, just for evaluation for SSA, please contact me at babydoll.beretta@gmail.com.
I'm willing to travel anywhere in Oklahoma, Texas, Kansas, or Missouri. IF there is a place not in one of those states I mentioned, but in the USA, that you think is promising, tell me that also. One could say that I am desperate at this point. I just want to live a more normal life.

--MorelaterZ--

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--

Since I last posted, here's what's been goin' on

The weekend was bad, but not as bad as I feared. I was exhausted from just doing mundane things like the laundry. I think I got thru the graduation ceremony because I took Tylenol before I left. The drive home was hard because I was trying not to fall asleep. I really should have let Jeff drive.

Since then, I've been sleeping at all the wrong times, getting extremely tired soon after I get up in the morning. Everything is hurting, and the stress from living with my mother is really starting to get to me. She's having money problems and I, not being able to work and contribute, am getting the brunt of my mother's melodramatic attitude. I'm sure she thinks I'm not trying hard enough to find a job, or trying to find out about the status of my hearing, or whatever. I'm just not trying hard enough in her opinion.

I have called again about the results of my 4/20 hearing, and it's still with the "decision writer". I don't know if it's taking so long because there are a lot of cases, or because I'm going to be turned down a third time. I was told that I should call back at the end of June if I haven't heard anything. I just want to know, so I can reapply if need be.

I heard from Saon this week, and he's planning on leaving Minnesota sometime in the next couple of weeks. So, of course, I'm worrying about him. He was so depressed on the phone.

Now, I'm feeling tired and worn out, like a wet rag. My symptoms only get worse when it's hot outside. It's in the low 90's today, with more of the same for the weekend.

I live in Oklahoma...and tornadoes stress me out. It's tornado season here.

--MorelaterZ--

I survived Graduation

...let's see how I do over the weekend.

I'm sore now, and my hands are killing me. Typing is taking a great effort. I'm tired but can't sleep, and I'm scatterbrained. I'm lucky I remembered where I parked the car.

I find myself alternatively weepy-eyed and on the verge of all out rage. I don't understand any of that at all. Is there another problem here that I am not aware of?

God help me.


MorelaterZ--

Gettin' by with a little flare.

This flare is the worst one I've had since the fall of 2002, when Saon came to live with me. At that time, I didn't know to call it a "flare", I just called it a bad day, or a bad week.

But this is the most pain I have been in since before my diagnosis. My hands, wrists, feet and ankles are killin me from the RA, my left knee and back from the OA and everywhere else by the FMS. I've actually had to take the Tylenol PM I bought a couple of times, but I was still sleepy from the effects all the following day.

I can barely write my name, I have headaches that I've never had before (I think they're migraines because they make me sick to my stomach they hurt so bad), and I'm just fatigued beyond belief. Just thinking about doing things wears me out. I don't know how I'm ever going to get thru my son's graduation on Friday. Even if I do get thru it, I will be exhausted for the rest of the weekend.

I just can't live my life like this. I used to be active and do things. Now I feel quite useless and redundant. I hate feeling like this. I want my active, can't wait to go out and do things life back! I don't want people to not believe I have this problem, or to feel sorry for me, or just not understand what I am going thru.

I want someone else to talk to about this besides my 18 year old. He's got a lot to think about and do now that he's going to college in the fall. The last thing he should be worring about is his mother and her medical problems.

Help me. Please, someone...

MorelaterZ--

New therapy helps chronic fatigue patients improve life--

From KFOR Channel 4, Oklahoma City

MEG ALEXANDER reports

Updated: May 14, 2004 9:01 AM

You may think of chronic fatigue syndrome as an illness that makes the body tired. But many patients and researchers will tell you the disease also wears out the mind.

Now, a new therapy is helping patients gain a better quality of life and a sense of control over this often-frightening illness.

It looks like a video game, but instead of fighting aliens, Polly Little is fighting an illness, chronic fatigue syndrome. It's a mysterious disease that debilitates both body and mind.

"I wasn't even able to do simple things like giving a store clerk the right amount of change," said Polly Little, a chronic fatigue patient.

The video is actually part of a therapy called neurocognitive feedback that works to retrain abnormal brain waves researchers believe are responsible for the memory and focus problems many patients such as Polly experience.

"It's like a physical therapy exercise program for the brain," said Dr. Myra Preston, a neurophysiologist.

The key is a brain map that documents the brain wave irregularities and tracks the progress of the therapy. Preston patented the mapping method.

"The brains of chronic fatigue patients look like those of people who are asleep," she said.

Patient Judy Noblitt is having her map updated, so Preston can see if the feedback therapy is working.

Like many chronic fatigue Judy quickly gives out and can't complete the mental tasks given to her, it's a symptom common in chronic fatigue and one that often leads to misdiagnosis.

"They say you're depressed, you need to see a psychiatrist, there's nothing really wrong with you," Noblitt said.

But the abnormal brainwaves on Noblitt's brain map tell a different story. Her sleep waves dominate her brain activity while she's awake. But the map also shows feedback therapy is helping her sleepy brain stay awake longer.

"Overall, Judy's brain is functioning about 40 percent better," Preston said.

Preston notes the map and therapy can't cure the brain wave malfunction, but they can help patients like Judy and Polly gain a better quality of life.

"I've been able to get off quite a few of my medications, and no other treatment that I've done have I been able to do that," Little said.

These are victories that are helping these women regain control over their lives.

Preston said her chronic fatigue patients average about 60 1-hour neurocognitive feedback therapy sessions. There is also a home unit available.

This I've got to see...

The NBC affiliate here in OKC is going to run a report tomorrow about how to "beat" CFS. Is this going to be a major breakthru, or something that works only for a select few CFS patients? I figure that if it were a major breakthru, we'd have heard some news about it long before now.

So I will watch this with an open mind. However, to implement any kind of treatment, I will still need money to pay for it. Kinda hard to do when you're broke.

I called the hearings office yesterday, and was told that my case is now with the decisions writer, and that I could expect a response in as little as 2 weeks, or as long as 2 months or more. Every day that I don't get treatment for this sets me back even further. God only knows what damage has been done in the interim. The pain from the flares (which seems to be more frequent now) is going to drive me insane. Quite literally insane.

I'm praying hard that I get approved. First and foremost, I need to get this under control so I can get on with my life. Now that Jeff's been officially accepted at OU, I need and want to be able to assist him financially, and being approved for Disability and SSI can do that, because as long as Jeff is a full time student, he'll get a check, too. It prolly won't be much, but it will be something.

MorelaterZ--

I'm in pain...(painpainpainpainpain...)

All I did was sit for 20 minutes at the library, and i'm paying for it now. I hurt so much that I was in tears by the time i got to the car.

Lord, I need to be approved for Disability and SSI...I need to get back to seeing doctors who can help me cope with this. This will drive me insane!

And do you think I could work like this? I know I can't. Who would hire me if I'm in so much pain after only 20 minutes?

How am I ever going to get through Jeff's graduation ceremony? It's going to be at least 4 hours long! They'll have to carry me out on a stretcher...

I don't want to think about that for now...

MorelaterZ--

I meant to post this here, not in the other blog

(and i'm so scatterbrained, I posted this before I was ready...)

Jeff and I did the mall thing again today. He wanted to look for a book (some anime thing, I'm sure). I walked around. Graduations in three weeks so I was kinda half heartedly looking for ideas for gifts. When we got home, I went upstairs to watch TV and I fell dead asleep for three and a half hours! I felt tired, but I didn't realize I was THAT tired!

Still have the cold, and it's settled into my vocal chords (oh. great.) so I'm a little hoarse. Still achy though, so I'm sure now it's not from the cold. It's a damn flare. My back still hurts, and I can't think straight (and apparently I can't spell my way out of a paper bag today because I've been correcting every other word as I type).

And, because I slept so soundly today, I'm awake now. Lovely.

MorelaterZ--

Getting a lot of good vibes (and advice) here

There is a FMS/CFS support group at Yahoo! Groups that I've been following. I've gotten some support and helpful advice there in the past week or so.

But, Lord, why couldn't I have found this group a year ago???

I really am going to bed now...

MorelaterZ--

but it's the waiting that's gonna kill me.

Nine days since my hearing. Right now, I have this killer cold, and I'm achy. I don't know if I'm coming down with something other than a cold, or it's an FMS flare. I'm betting on the flare, though. My lower back has been unusually stiff today. That concerns me because when my back gets that way, I'm going to have muscle spasms at some point and will be unable to move or do anything.

I just want to know if I've been turned down a 3rd time, or what. I was told it might take some weeks to find out the verdict. After all the waiting to get this hearing, waiting for the decision is going to stress me out, which will not help my symptoms one damned bit.

I gotta go to bed. I just got extremely sleepy.

MorelaterZ--

It went well...

The SSA hearing lasted a little over an hour. The judge was rather nice and wasn't condescending (unlike a couple of the lawyers I spoke with prior to this hearing). He asked me questions, had me describe a typical day, what my work history was like before I got diagnosed with FMS, the kind of jobs I thought I could still perform (honestly, your honor, none, I told him). Then an occupational expert testified about the types of jobs that my skills could transfer to, if I could hypothetically still perform these jobs based on hypothetical situations ("if I reduced her work time from eight hours to four, could she still do these jobs?" "...from four to two hours..." etc.). Then (and this is good...), the judge asked the expert "if she were working, but missed quite a bit of work because of her disability, would she still be able to keep her job?", the expert said, no, because according to the DOT, a worker could only be absent one day a month. Any more than that, and it beomes a dependibility issue. My question was, if I could only work one or two days a week, what employer in their right mind would hire me?

Still, I don't hold out any hope of getting approved. The judge understood that because I had no income, I couldn't afford to see any doctors to get treatment for FMS. If I do get disability and SSI, I will be quite shocked and surprised and extremely happy. I would go out and restart treatment so I could go back to work someday. I can't retire for 27 years, so going back to work would be a priority in my life. It's just right now, I can't work for more than an hour without pain.

Right now, I'm in pain, so I gotta go.

MorelaterZ--