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--