Can't sleep

It's 4:45am CDT and I have yet to fall asleep tonight. Despite the fact that I took Aleve before I went to bed, I'm still in a great deal of pain.

Can we say flare? I knew you could... boy, does this suck. If there is a good side to this, at least I don't have to be in class today. My summer classes start a week from Monday.

Well, it's off to bed... perchance to dream.

I made it thru the semester!

Go me!

It's still the sitting in one place that really gets to me, but it's also only one hour at a time for most of my classes. I can handle that.

That's not to say that I don't have pain or flares. About a month ago, I had a pretty bad flare, and so far (knock wood), OTC drugs seem to keep it in check.

Diet sodas are my worst enemy these days. I don't even have to drink a whole bottle. A few hours later, I'm hurtin' big time. One night recently, I went out to dinner with my mother and my 21 year old son, and accidently put Equal in my coffee with the real sugar I used, and man, I was paying for it later.

And no one still understands that when you poke me or press on my arms, that it hurts more than it does for the Average Jane... I actually get bruises, and the pokes are not all that hard (not like someone jabbing their finger into my arm with a fair amount of force), but i get bruises anyway. It's weird, and though I try to explain that I have FMS and that is one of the "perks" (I know...boo hiss! LOL), they tune out. Most people have never heard of it, much less know someone who has it (for some of my younger classmates, I'm the first person they know who has it).

When I was living in Wyoming last summer, I used to bump my legs on everything all the time, and I was covered with bruises. I was hesitant to wear skirts to work because I didn't want to answer questions about my being "accident prone".

So... I made it thru a whole semester at school without too much problem. Only 4 more semesters to go until I get my degree.

MorelaterZ--

Playing catch up

Sorry for the long time between postings. I've been a bit busy.

Since my last post in October, I have moved to a new town about 20 minutes from where I was living with my mom, I applied for and eventually got unemployment, and I started school with the goal of getting an Associate in Broadcasting.

All was going well until a couple of weeks ago. Then everything started to hurt again.

Aleve (my miracle OTC drug of choice) takes care of most of the pain, but I really do need to see a doctor for all the other stuff.

Most days though, I feel pretty good. So I consider myself lucky.

I really should check in on the groups I've joined to see what's new in the world of FMS.

~until we meet again~

I"ve never been so damn sore in all my life!

I think I am smack dab in the middle of a major league flare. Everything is sore, stiff and very painful.

Sleeping on the floor at my mom's house doesn't help, but she gave away my hide a bed while I was in Wyoming.

Aleve and I are the best of friends, and the only reason I'm sleeping these days is because I am so exhausted every day from doing nothing. I went from working 12-15 hour days to zero, and it all feels the same to me, painwise.

I know I need to see a doctor. I saw a doctor in Wyoming before I left, and all he could tell me is that I have somehow developed an ulcer. With all the stuff I went thru at my job, that news didn't surprise me in the least. He was a GP, and the closest Rheumy was at least 30 miles away. With no car, it may as well have been on the friggin moon.

I just have to tough it out I guess, just like I have for the last four years. One of these days soon, I'm actually going to have a job with medical bennies, and I'm going to take full advantage of it.

Until then, I might see if the great state of Oklahoma can help me out somehow. I'm going back to school, maybe they'll take pity on a poor non traditional college student...

We shall see...

FMS article

I found this interesting. Click on the link and read it for yourself.

It's time for me to finally get this under control. Keeping busy and trying not to think about it doesn't cut it anymore.

Maybe this isn't going as well as I had hoped it would

I am still so tired, and I'm pretty sure I'm used to the altitude by now.

After about three months pain free since i've been here, I'm now in pain all the time it seems.

Aleve and I are fast becoming reacquainted.

I have a doctor's appointment on Sept. 18th. It's a family practice doc, but I gotta start somewhere, right?

I just want to rule other things out, and I haven't had a general check up in a very long time. I'm 42 years old; I need to find out what I should be on the look out for because I'm getting older.

So far, it's just bifocals.

I've lost weight, but I really think that's from all the walking I'm doing because I still don't have a car. I'm not eating as much either. I wonder if that means something significant?

And of course, I want to ask about a rheumy, too. I could benefit from seeing someone.

I'm almost desperate enough to try all those supposed "cures" that are out there. Almost, but not quite. I'm not stupid.

I get a lot of freedom in my job to stand and stretch and move around, so what I'm feeling now is not because I'm stuck in a chair eight hours a day.

Maybe it's the hours I work: 5am to 2pm. If the job weren't fun, I'd have never taken the position and moved all the way up here.

I have my dream job. So why do I feel iti's slowly becoming a nightmare?

Any thoughts?

I've been here two months (almost)... a status report

Haven't found a doctor to see here yet, but I think I'm doing pretty well.

For now, Aleve helps with some of the pain, and sometimes, I have my moments where I question my sanity about taking this job. It invloves a lot of sitting, and at times, I am in a lot of pain.

The thing I cannot get used to is the altitude. The city I'm in is not quite a mile high, but I've been exhausted nearly every day I've been here. Most people who have been here a while say that's normal, and that eventually, I will get used to it. My question is: WHEN?! LOL

It's been really hot here, with a weekend not too long ago in the triple digits. There's next to no humidity, so it just feels hot, as opposed to feeling like a limp dishrag because I'm sweating a lot. Don't get me wrong, I do sweat, despite the humidity, just not as much as I did living in Oklahoma.

All in all, I have more good days than bad. Is that a remission of sorts? I don't know. Perhaps I should check the local library for books on FMS. At any rate, it will at least give me something to read.

After I get more acclimated here, I'll start looking for a rheumatologist. I know I'm out in the middle of nowhere pretty much, but there has to be at least one rheumy here, right?

MorelaterZ--

An Announcement

I'm in the process of moving. Posts will resume when I get connected back up to the internet.

The reason I'm moving... I got a job! I had been going to school to study broadcasting, and about two weeks ago, I was offered a job in Wyoming. I accepted and now I'm headed to Wyoming to reclaim my life as a working person with FMS. The job has benefits, so maybe I can get this managed properly after all this time.

Wish me luck and I'll see you soon...

--MorelaterZ--

An update

I know it's been a while since I updated this blog with the progression of my own struggle with FMS. But frankly, there hasn't been much to update. I still experience pain on a daily basis, though somewhat reduced (yay!!), still take my infamous "three hour naps", and stay up way too late at night because it's too uncomfortable to sleep. Aleve is my best friend, as far as pain relievers are concerned.

I'm still not seeing a rheumatologist, because I still don't have the money or the health insurance to pay for one. Hopefully, when I get the job I hope to get here in the near future, there will at least be money to pay for regular treatments. Lord knows I need to see someone, or more correctly, a number of someones, to keep this under better control.

I do, however, have a swollen gland in my neck. It doesn't really bother me painwise, and Dr. Brother-in-law says it could be related to the mononucleosis I had 30 years ago when I was 12. It only bothers me because when I turn my head, it is noticeable. Just another thing on the list to have checked when I get the opportunity to do so.

Prayer and activity do help, but there are just some days I just don't want to get out of bed. And, coupled with the RA I was diagnosed with around the same time as the FMS, it's not a fun ride. Tolerable, yes. Fun? Not even close!

I'm also looking to change the look of my blog somewhat... jazz it up a little, or something. The thing I'm thinking of requires an artist, as I want to change the header to something other than just it saying the title of this blog. I know several artists, and maybe one of them will do the drawing I'm thinking of for free.

Oh, and I was reading over my stats the other day, and there were a couple that got folks here asking about cat health. This blog isn't about cats. I love cats, I've had a few of them. I lost my FMS diagnosing cat in January (Columbus RIP 1999-2006). But if you're looking for advice about your cat's health, contact your vet.

And that's the update. I'll still post articles about FMS/CFS/CFIDS when I run across some good ones.

Before I go-- if you want to link to my site, go ahead. Just email me your site's link and I'll add it to my list on the sidebar. Fair?

--MorelaterZ--

Well, duh! We all knew that

Chronic fatigue may all be in the genes, US says
From Yahoo! News:

By Maggie Fox, Health and Science Correspondent

Chronic fatigue syndrome, once dismissed by some medical experts as being all in the head, has a clear biological basis, the U.S. Centers for Disease Control and Prevention said on Thursday.

A comprehensive study of 227 chronic fatigue syndrome patients shows several genetic differences, the CDC team found.

"It really is the first credible evidence for a biological basis for chronic fatigue syndrome," CDC Director Dr. Julie Gerberding told reporters in a telephone briefing.

"For the first time ever, we have documented that people with CFS have certain genes that are related to the parts of the brain activity that mediate the stress response," added Dr. William Reeves, who heads CDC's chronic fatigue syndrome public health research program.

"They have different gene activity levels that are related to the body's ability to adapt to stresses that occur through life." Such stresses may include aging and illness, he added.

Researchers have recently discarded theories that viruses like Epstein-Barr virus cause chronic fatigue syndrome, or that some immune system weakness might be involved.

"These findings are important because they will help to focus our research efforts to identify diagnostic tools and more effective treatments which ultimately could alleviate a lot of pain and suffering," Reeves said.

Chronic fatigue syndrome is defined by a range of symptoms, including fatigue, swollen lymph nodes, headaches, problems with memory and concentration and often pain.

AT LEAST 1 MILLION WITH CHRONIC FATIGUE IN US

"At least a million American suffer from CFS," Reeves said.

"The average family in which a member suffers from CFS forgoes an estimated $20,000 a year in lost earnings and savings."

Writing in the April issue of Pharmacogenomics, the CDC team said they extensively studied 227 volunteers with chronic fatigue syndrome who spent two days in a hospital ward. Their blood was studied, they were watched and monitored as they slept, and the activity of 20,000 genes was analyzed.

The journal also published more than a dozen papers by researchers asserting a biological basis for the syndrome.

The CDC used a new multidisciplinary approach, which it calls Computational Challenge. They created a molecular profile of each patient, said Dr. Suzanne Vernon, Molecular Epidemiology Team Leader for the Chronic Fatigue Syndrome Research Laboratory.

"We put together four teams of different experts and challenged them to develop ways to integrate and analyze a wide range of medical data so as to identify those things that could improve the diagnosis, treatment, or understanding of CFS," Vernon said.

"Perhaps we are closest to being able to predict how someone will respond to medications, for instance," Vernon added.

Gerberding said the new approach, which uses genetics to look for causes of disease on a population-wide level, might also be applied to diseases such as autism, which many experts also believe may be caused by an underlying genetic susceptibility.


=====
Though the article doesn't mention FMS specifically, I'm willing to bet that the same thing is true of FMS as well.



--MorelaterZ--

From RemedyFind: Causes of Fibromyalgia-- Part 3 of 3

This is Part 3 of a three-part article discussing theories about the causes / triggers of Fibromyalgia. Please understand that most of these theories have yet to be tested, let alone proven.

LYME DISEASE
This disease is caused by a tick bite and symptoms are very similar to FMS/CFIDS. Accurately diagnosing Lyme Disease with blood tests can be problematic, especially if the infection happened a while ago. I heard from one lady who was treated (falsely) for Lyme Disease and now her FMS symptoms are far worse.

TYPE A PERSONALITY
I have yet to meet a person with fibromyalgia who was not intelligent, articulate, and high-achieving. It could be that we manufacture more stress chemicals than our "Type B" friends. We like to stay busy, achieve goals, and carry a lot of responsibility. Because of this, the disabilities that result from fibromyalgia can be devastating to us. Learning to pace ourselves and not saying "YES" to every opportunity is difficult. However, we can re-shape our lives into a more relaxed mode and learn that the world will not cave in if we do not participate in everything. Fibromyalgia does not get better by "pushing the envelope" of our endurance--in fact, it is a sure way to bring on a flare.

SPINAL STENOSIS
It may sound drastic, but a special kind of surgery is being used to successfully cure FMS/CFIDS in some cases. Spinal Stenosis is where the spinal cord is compressed by surrounding bone (such as a herniated disk). This can cause debilitating neurological symptoms throughout the entire body, including pain and weakness. Dr. Tim Johnson reported that a neurosurgical procedure being performed on sufferers of fibromyalgia and chronic fatigue had improved their pain and fatigue. Dr. Banner of Dotham, Alabama found many of his patients with chronic pain syndromes had cervical spinal pathology. Some had compression of the spinal cord at the exit from the skull, known as Chiari malformation. Many of these patients had surgery at the University of Alabama by Dr. Michael Rosner and Dr. Dan Heffez. Many had good results and reported a reduction in pain and fatigue after the surgery.

GLUTEN INTOLERANCE
This is also known as celiac disease. People with this condition cannot eat grains such as wheat, barley and rye. Some people who thought they had fibromyalgia actually found out they have celiac disease.

SUBSTANCE P
There are abnormally low levels of blood flow in the parts of the brain that deal with pain in people with FMS. We have twice the level of a brain chemical called Substance P, which helps nervous system cells communicate with each other about painful stimuli. Elevated P levels may actually produce the higher levels of pain throughout the body.

BLOOD VOLUME
Dr. David S. Bell's study with endocrinologist Dr. David Streeten yielded a startling discovery: the vast majority of Bell's FMS/CFIDS patients had extraordinarily low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body).

HISTAMINE INTOLERANCE
Many of us with fibromyalgia sleep better if we take a mild antihistamine at bedtime. However, Dr. Felix Ravikovich says that histamine regulates vital functions such as hormonal production, production of neurotransmitters (including serotonin, endorphins and noradrenalin), vascular tone, bowel motility, pain, libido, thirst, and appetite. Because excessive release of histamine is the cause of allergies, doctors prescribe antihistamines to block histamine release. But Dr. Ravikovich says histamine is a self-remedy that can rectify its own production. (I have even heard from people with FMS who say that bee sting therapy has helped them!)

BLOOD THICKNESS
Dr. John Couvaras, while researching infertility in women, found a hypercoagulable state due to a coagulation protein defect that exists in women who were infertile and/or had recurrent spontaneous abortions. When Dr. Couvaras put women on low dose heparin in order to become pregnant, their CFS/FMS symptoms, pelvic pain, and migraine-like headaches diminished.

ANTIBIOTICS
Debra Simon has fascinating information on her site about the overuse of antibiotics in creating yeast-related illnesses, which have many of the same characteristics as fibromyalgia.

VACCINATIONS
Mandatory childhood vaccinations may be the cause of fibromyalgia, chronic fatigue syndrome and a lot of other illnesses, according to some medical experts. See Dr. Joseph Mercola’s site for more information.

This concludes the discussion about the possible causes of fibromyalgia.

From RemedyFind: Causes of Fibromyalgia-- Part 2 of 3

This is Part 2 of a three-part article discussing theories about the causes of Fibromyalgia. Please understand that most of these theories have yet to be tested, let alone proven. (See previous post on this subject)

VIRUSES
Some researchers believe that the Cytomegalo virus is the cause of Fibromyalgia/Chronic Fatigue and Immune Dysfunction FMS/CFIDS. The antibiotic Doxycycline is sometimes used successfully to treat it, but not without side effects. FMS patients often have active bacterial and viral infections like Epstein Barr or Mono, which drain the body’s immune system. Fatigue and muscle pain can be caused by an undetected chronic infection that never improved.

ADRENAL EXHAUSTION
The adrenals are tiny but powerful endocrine glands that sit on top of our kidneys and secrete steroid hormones. Adrenal fatigue can result from persistent or severe emotional or physical stress. If you need sugar, salty foods, or caffeine to keep yourself going, you may have adrenal fatigue. Dr. James Wilson and Dr. Rodger Murphree have information on their websites about how to support and repair the adrenal glands.

MITOCHONDRIA DYSFUNCTION
Mitochondria are the energy producers of the cells. According to Dr. Kent Holtorf, dysfunction in the mitochondria results in the cells starving for energy and patients feeling fatigued, lacking in energy and unable to overcome infections.

LEAKY GUT
Dr. Devin Starlanyl discusses leaky gut syndrome in her book "Fibromyalgia and Chronic Myofascial Pain Syndrome." Also, Dr. Sherry Rogers--another M.D. with fibromyalgia-- states that when people take antibiotics, aspirin and other pain reducing drugs, it can cause intestinal permeability. This is where cells within the intestine separate and small food particles begin to enter the blood stream. Then white fighter cells attack because they see these food particles as something to be destroyed. In doing this, bad toxins are formed in the blood and this causes soreness throughout the body. Chemical sensitivities are caused from leaky gut syndrome.

ELECTROMAGNETIC FIELDS
Some insomniacs who get rid of electromagnetic fields in their bedrooms are able to sleep like babies! You might try shutting off the circuit breaker to your bedroom and see if that helps your sleep improve, or try a magnetic mattress pad from a reputable company.

AUTONOMIC NERVOUS SYSTEM DYSFUNCTION ("DYSAUTONOMIA")
Dr. Manuel Martinez-Lavin of the National Cardiology Institute of Mexico wrote an excellent article explaining fibromyalgia as an autonomic (sympathetic) nervous system dysfunction. His theory is that people with FMS have a sympathetic nervous system that is persistently hyperactive, but hypo-reactive to stress.

MERCURY POISONING
There are many sources of mercury all around us. Dental fillings are just one of them. With amalgams, mercury is released when the teeth grind together while chewing. This mercury is absorbed into blood and tissue--including the pituitary and hypothalamus glands. These two glands play a part in FMS symptoms. Many researchers believe that the brain dysfunction which causes fibromyalgia is a direct result of mercury toxicity. (Some people with FMS have had their amalgam dental fillings replaced with other materials, but not all report improvement in their symptoms.)

SOFT DRINKS
Carbonated beverages contain orthophosphoric acid that leaches calcium and magnesium from the body. These two minerals are sometimes called “nature’s tranquilizers. They are absolutely necessary for healthy muscles and bones and to avoid muscle cramping. (Diet soft drinks are even worse than regular, because they contain aspartame, an excitotoxin.)

THYROID
Symptoms of either hypothyroidism or hyperthyroidism are remarkably similar to fibromyalgia. Hypothyroid symptoms include fatigue, inability to tolerate cold, fertility problems, muscle weakness, muscle cramps, hair loss, recurrent infections, constipation, depression, difficulty concentrating, slow speech, etc. Hyperthyroid symptoms include nervousness, irritability, a constant feeling of being hot, insomnia, fatigue, hair loss, hand tremors, rapid heartbeat, etc. A blood test can detect an underactive or overactive thyroid gland. There is also a more difficult to detect thyroid problem called “Wilson’s Syndrome.” I have heard from several women whose fibromyalgia symptoms abated when their thyroid problems were detected and correctly treated.

FOOD ALLERGIES
People with fibromyalgia have more incidences of food allergies and sensitivities. Some common allergic / sensitive foods are wheat, dairy, sugar, corn, soy, eggs, peanuts, oranges, chocolate and fermented food. If you suspect any of these are causing you problems, try eliminating them from your diet one at a time and listen to your body. Also, some people with FMS report more muscle pain after eating tomatoes, bell peppers, or potatoes (nightshade vegetables). Tomatoes contain high levels of glutamates, which can cause muscle pain.

STRESS
Prolonged physical or emotional stress can cause fibromyalgia. We deplete the helpful chemicals in our “stress bank” until we are running on empty. We all know how bad we feel physically when there is disharmony in our personal lives, and chronic "invisible" illness puts additional strain on ones personal life and relationships, so this can become a vicious cycle. I recently read a study about how arguing and discord in marriage can suppress the immune system by producing elevated stress hormones.

I've gone Blog Mad!

I've just become aware of a new blogging community, Blog Mad, that I feel has a lot of promise. You earn credits (whole credits, not the partial ones like on Blog Explosion) for surfing member blogs. There's a lot of other fun stuff there, too.

Right now, it's by invitation only, so if you want an invite, shoot me an email, and I'll send one right out to you.

It promises to be interesting, so give it a try!

From RemedyFind: Causes of Fibromyalgia

You can read the whole newsletter here.


What causes fibromyalgia (FMS)? The answer is…nobody really knows, but there are a LOT of theories, which we will explore in this article (Part 1 of 2).

If you have fibromyalgia, then you know the miserable, life-wrecking symptoms of widespread body pain, muscle stiffness, insomnia, fatigue, depression, cognitive problems (fibro fog), irritable bowel syndrome (IBS), and possibly other unpleasant things to deal with on an everyday basis.

Medical researchers theorize that fibromyalgia may be caused by genetics, food additives (such as excitotoxins), mercury poisoning from dental fillings, neurochemical imbalances caused by diet or stress, viral infections, sleep disorders, toxicity, accidents, hormone imbalances, vaccinations, hypothalamus malfunction, surgery, severe emotional or physical trauma, yeast overgrowth (candidiasis) or nutritional deficiencies. I will attempt to briefly explain some of these below.

Read the rest of this article here. Part 2 is in next month's newsletter.



I know I've been neglecting this blog for a while. I'm trying to find a job in radio with benefits so I can start treatment for my FMS again. I've noticed that when I'm active, as I was with going to school, that I feel better, but I still have my bad days. I'm coping the best I can. I would have liked to get disability, but it just wasn't to be, I suppose.

I'll try to update this more often as I find articles of interest, or to blog about my symptoms (or lack of them).

--MorelaterZ--

Pain relief improves fibromyalgia sufferers' lives --via Yahoo! News

This sounds quite promising!

God knows it's about freakin' time that fibromyalgia patients need something to help them manage their pain better. This sounds like something that I'd like to investigate further when funds and a job with medical bennies permits.

I have now gone over the 2 1/2 year mark since I had regular care for my FMS. Tylenol to aleviate the pain just doesn't cut it any more, and the drugs I was taking (courtesy of my brother in law, the doctor) have come under a serious cloud.

I also decided that I would not go to a Administrative Law Judge hearing, so I let the deadline come and go. What I think I'll do instead is wait for my name change (regaining the use of my maiden name after my divorce) to be recognized by SSA, then reapply under that name. At the very least, I should get some kind of compensation for the nearly three years I was unable to work a full time job because of my FMS symptoms. Even now, going to school, I'm still in a great deal of pain a lot of the time, and am constantly exhausted (I take what I've referred to in my other blog as my "infamous three hour naps").

There is someone who is becoming a big part of my life who I need to educate on the facts about fibromyalgia. He'd never heard of it until I told him I had it. I need a gentle way to approach the subject with out scaring him off.

Any suggestions?


--MorelaterZ--

Uh, oh...this is not good.

Let me tell you about my feet.

No, nothing like that; nothing nasty or gross. Just that my feet are killing me on a daily basis now. Or, rather, just my right foot.

In addition to the FMS, I also have RA. The RA is what I'm having trouble with now, in addition to the crap that FMS puts me through (can we say three hour naps?).

The makers of Tylenol will probably make a mint off me alone, I buy so much of their products.

Unfortunately, it doesn't seem to help the RA that is slowly and painfully taking over my right foot, especially if I have to stand for long periods of time, like I did the other night. Not only was I in a great deal of pain, but then both my feet cramped up on me to the point where I thought I was going to have to call someone to get me and drag me into class. Literally drag...

The last time I worked my security job, my right foot was hurting so much that I could barely put enough pressure on it to depress the gas pedal and drive home.

As one of my sons says, "Welcome to Hell. It gets a tad warm."

Welcome to my world. The world of near constant pain, fatigue, no health insurance or money to speak of, and me pushing myself beyond my limits because I want to excel in school.

It's a hard knock life...but I knock right back. I have to. I don't want to be in the same place I was a year ago, when I seriously thought about ending my life because the pain and the depression was almost too much for me to bear. I have a life, a future now, and I have to keep going. No one's going to hand me anything I didn't earn.

Isn't it painfully obvious that SSA didn't think I deserved Disability and SSI? I worked for years to earn the right to claim Disability and SSI in the event I could not work. So when I try to claim what I think is rightfully mine, they shoot me down.

But I gotta keep on keepin' on. It's the only thing I have left.

--MorelaterZ--

This is insane...

I worked for 2 1/2 hours Saturday afternoon, and my ankles, especially the right one, hurt like crazy! It took a lot of effort to even put weight on my right foot because the ankle hurt so much.

Driving home was torture! I was using the accelorator with my big toe, because it was the only point on my right foot that didn't hurt. Even when I was sitting still after I got home, there were shooting pains so strong I winced.

So this is what RA is going to do to me. As if the pain I feel from the FMS wasn't bad enough, or constant enough, now I have this to contend with.

Great. Just great.

I requested a hearing before an Administrative Law Judge, which I know I won't get for at least a year. Maybe I won't need it, I don't know. I just hope that all I've been going to school for isn't for naught because I'm in too much pain to work full time.

Pesonally, I think SSA should pay me at least for the time I was truly unable to work, between May 2002 and March of 2005, when I went back to school. I don't care what their so-called "experts" say, I was not able to work between those dates because I was in pain, both physical and mental. Imagine all the people who fall through the cracks because someone in a position of authority doesn't think they are disabled enough.

Maybe they're just hoping I'll get frustrated and give up. I want to work, and I'm going to school to learn a new industry so I can go back to work, but what about the nearly three years I was unable to work? Shouldn't I get something for that? Some kind of compensation for my pain? I wold have worked during those three years if I could, but I could not.

I need a major break.


--MorelaterZ--

I'm just thinking about it at this point

but I'm considering not asking for an Administrative Law Judge to review my case.

It will take nearly a year to get a hearing date, and I don't think I have the strength, mentally or phyisically, to wait that long.

When I'm done with school, I hope to have a job before I can get an Administrative Law Judge to reconsider my case.

I suppose I could put in for it anyway, then if I am employed by that time, I can cancel it.

I really need to get in touch with that lawyer!



--MorelaterZ--

I've been down this road before...

and I don't like the return trip I may have to make.

Heard from SSA on Friday. Turned down again. Next step is Administrative Law Judge review. A process that takes damn near a year to get to.

They feel that I'm not disabled enough to get benefits. They feel I can still sit at a desk for eight hours a day and do a full time job. I know I can't. I can barely get thru the part time job I have now that pays me next to nothing. I'm in quite a bit of pain after 5 hours at school in which I am allowed to move around at my leasure. I'm still taking 4 and 5 hour naps every day because I'm exhausted.

I'm still depressed, though it has been better lately. They said that I am not depressed enough to keep me from working. They should have seen me this time last year, when I seriously considered suicide.

What did they do, talk to my sister who, to this day, thinks I'm faking the whole thing for attention and sympathy? Believe me, if I wanted attention that badly, I'd do something other than fake chronic pain, exhaustion and depression. Unfortunately for her, everything I am feeling is all too real. Before I was diagnosed with FMS, I didn't even know what it was, much less know enough about it to fake it.

On Tuesday (5/31) I'm calling the lawyer I can't afford to get his ideas about how to convince SSA I really do have a problem. I work because I have no choice, I need the money. I'm going to school to learn a new trade so I can make money, but that takes time (at least 6 more months).

So that long road to this point has come to an all too familiar crossroad. In September, it will be three years since I originally filed for Disability and SSI in Massachusetts. Maybe, in retrospect, I should have stayed there. I might have had it by now.

But, then, I wouldn't have come to this point in my life.

Whatever doesn't kill you makes you stronger. Well, shit, I should be fucking Hercules by now!


--MorelaterZ--

R-E-S-P-E-C-T (find out what it means to me...)

I started to leave the following comment over on my friend, Johanna's blog, but it got to be so long that I thought I'd post it here instead:


Though there are times that I'd just like to strangle doctors who suggest that my medical problems and my chronic pain are all my fault. They're not me, and they don't know me better than I know me. There is no real motivation to lie about how I feel. I just want to feel "normal" again, period. There are some quacks out there who suggest that all my problems would be solved if I lost weight, but since I've had these problems (long before I knew what they were called) for most of my life, how do they know that the excess weight I carry is the cause of all my problems? I think it's a symptom, just like the pain is a symptom. It's too easy and convenient to blame my chronic pain on my weight.

I've shed too many tears over this for doctors to treat me like a hypocondriac or that it's all my fault. Doctors do not go to medical school to play God, but some of them think (whether they admit it or not) they hold my future and my health in their hands because I came to them for help. Doesn't the Hippocratic Oath state: First do no harm? Some doctors harm their patients by not taking them and their pain (or other problems) seriously.

I know I've been labelled a "difficult" patient because I have no problem telling a doctor he's full of it. There's this one pain management doc in Massachusetts who treated me so badly, and with such comtempt, that when he came in to see me during one appointment and started telling me that I needed a shrink and not a pain management clinic, I told him point blank that the appointment was over. And I started to gather up my stuff and leave. When he objected to this, I said, "We're done, doc. Please leave the room so I can get dressed." I later wrote a letter to the Massachusetts medical board to complain. It wasn't until I had my administrative SSA hearing last year that I found out this quack had labelled me as "difficult". But I kinda thought he would. He pissed me off. And I called him on it.



Well, that's the whole thing I typed. I left a much shorter comment instead. I didn't want her server to crash because I became so verbose.

There are definitely doctors I don't respect. They're in it for the big bucks. "MD" does not stand for "Make Dollars". The doctors who get my respect have respect for their patients. The ones who say, okay you have a problem, lets work together to fix it.


--MorelaterZ--