Archive | August 2011

Insomnia and FMS


Well, I did the up all night bit again, save for about an hour when I dozed out on the sofa. And to make matters worse, when I did get up and go to bed, the pain started in to where I had to break out, for the first time in ages, a second dose of my pain killers.  I try very hard, NOT to do that, as the supply of them, is limited. But I did get at least some sleep.. sorta 😦

A sleep study I had done, shows the rather classic pattern of the ” sudden bursts of awake brain wave activity, happening in the brain of someone whose is supposed to be in deep stage 4 sleep ” Now what that means, in a layman’s terms, is that our very brain will suddenly throw alpha waves, into a time period when we are supposed to be having Delta waves, in other words, be in a state of deep sleep. This lack of deep sleep, is considered to be the main reason we have FM.

They know this, for the simple reason that if you deprive ordinary people of stage 4 sleep, they, rather rapidly in fact, start to show the common signs of FM. Now as to which comes first, no one knows.

What are the effects of this kind of sleep deprivation  ? They are very well known, and can be very serious, which makes one wonder why the idea is not given more attention. As the known effects are:


Effects of sleep deprivation

aching muscles
blurred vision
depression
daytime drowsiness
decreased mental activity and concentration
weakened immune system
dizziness
fainting
confusion
hand tremors
headache
hyperactivity
hypertension
irritability
lucid dreaming (once sleep resumes)
memory lapses or loss Article
nausea
slowed reaction time

And in extreme cases
Hallucinations (visual and auditory) and or death.

Now most of this, we all know very well, do we not, yet no one seems to take this  massive amount of overlapping evidence, seriously. Most of the things we are given for sleep, are either outright ineffective and or have so many side effects, they are worse than useless.

So it begs the question of why, if the detrimental effects are so will known, is nothing more positive, being done about it ?

Something to ponder, perhaps on the very nights I cannot sleep, since I seem to be doing a lot of those lately 😦

BB

Esta

Medical frustration’s continue and day to day life with FMS


Gurrr.. had to call my doctors office.. yet again yesterday. No less than 3 of my medications have to have pre authorization now ( thanks to medicaid changes) and as yet, nothing had been done on them. In fact, when I called the woman was reciting requests that had already been completed, and only one of them that had been faxed. So had to have my pharmacy re fax the entire lot.

And get this, the woman insisted that anytime something like that comes in, they get on it right away. Well, if that is the case, why do you have only one in front of you, when 3 have been sent in the last week ? 

But, the good news is, the bath chair I FINALLY got, works like a charm. It is amazing the little things, that we did not even realize were such a pain, like washing ones feet, that suddenly one can so, without having to worry about falling down. It was very relaxing in point of fact, as up to this moment, I did not quite grasp, just how tense I was in the bath, just to keep from falling out of the thing. So score one for me.

The rollenator thing, is gonna take some getting used to but I think it will serve very well, when its time to do the marathon walk about, like at my doctors office for example. I never can just sit there, as my feet have to be up. But, as my mate pointed out, I could just as easily take the rollenator, put it in front of me and use IT to prop my feet on.  🙂

The heat is still trying to murder us all, and is zapping energy like crazy. As there is only so much AC can do, to handle triple digit heat indexes. The hurricane Irene ( blessings on all in her path ) brought us just a dash of rain and a few days of slightly cooler temps for a couple days. 

Just a minor side note: Our TV went out,  for no particular good reason, but thanks to Freecycle, we were able to get a replacement in pretty fast. I am not a huge TV buff, but two things. One we pay a good deal for that aspect bundled with our phone and internet and Two, it’s the only the thing that saves me from going right up the wall some nights when I cannot sleep or the pain is too great for the wimpy PK’s my doc gives me, to handle and I desperately need a distraction.

It’s the weekend again, which means I cannot do a thing about riding herd on the grasshoppers I am trying to direct in the medical profession, so I refuse to even bother my brain about it.. at least until Monday 🙂

More soon…

BB

Esta

Doctor’s/Goverment who can’t seem to do their jobs and FMS


Ready to scream here. Recall that surgical consult I had to all but brow beat outta the doctor ? Well the silly woman screwed that up, and it was denied and now I have to backtrack the whole mess, to get it sorted out. Why, for the love all that is Holy, can’t people just DO their jobs ?

On a good note, the business with my hardware, that was ordered over 2 mts ago and its paperwork that was trashed almost beyond repair, is finally over. In fact, they are supposed to deliver them to my door, any time now. But I mean really, two months !!! For one lousy piece of paper.

It seems I no more than get one issue nailed, and up jumps another one, to take its place. It is a never ending battle, for healthcare. All I want to know is why ? As nine times outta ten, it is someone, somewhere, not doing their job !

Example: Have tired for weeks to get through the referral center, to get an appointment with my PCP. Finally gave up on that, as usual, and called her office, directly. Only to be told I can get in to see her in in Oct. Mind you we are still in Aug. here. 

What is up with these people to think that making an appointment, for a new issue I might add, can just wait for mts ?? That whatever I am suffering from, can just go on hold, until they get around to it ?

Another example: One of my medications, is no longer covered by medicaid. Ok, so that means that they have to order something else to replace it, right ? Well that was over a week ago and I and my pharmacy  are still waiting. Likewise I requested a referral to an ENT, over a mt. ago.. I am still waiting. 

All of the above, are people not doing their jobs here. Simple things, fill out the paperwork right for the most part, and make a few phone calls. Ya would think this would be easy. But no, I have to ride herd on the lot of them, calling and going over heads, and in short making a right pest of myself, to get dang near ANYTHING done.

Now, I know that most people can relate, when it comes to insurance of any kind, but can someone please tell me, why it has to be such a pain in the butt ? I mean really ? To basically ask people who are already sick, to have to deal with such crap, is beyond any standard of reasonable, yet, they do it.

It seems like if you stick the words medical or state run, in front of something, you can just about expect it is gonna be a nightmare of mis-fires and mistakes and we wonder why our government is broke ?

Seems pretty simple to me, if dang near every single thing they do, has to be done, 2-3 or four times each, since they cannot seem to get it right the first time, the cost factor, doubles in size for every time they screw it up.

Example: My mate finally got funding for schooling, which he is attending, however, there is yet to be anyone to even be working on it seems, the funding for the certifications at the end of the class, without which, I must hasten to add, makes the classes themselves, useless. No Cert means, you cannot DO the job you are being trained for. They already know we cannot afford to pay for a half a dozen certifications at 200 bucks or so a pop. Which brings up the second issue.

Nor have any of them got off their duffs and even try to work on funding for maintenance. Meaning funds to take care of house and home, while he is going to school, As we are talking almost a years worth of school here. Just as a note, he has already been off work for two years now, and the insurance money stopped coming, over a year ago. So we are living on our savings and borrowed time here, trying to get him trained to do a job he is able to do now.

I mean consider it. Fat lot of good it does to fund the schooling if A: No certs at the end of it all, meaning he couldn’t legally USE the training and B: He can’t attend the classes anyway, as we are homeless for lack of money. So it would be a case of both money, theirs and time, ours, down the drain.

This is the kind of mentality we fight everyday, the people that only do a half assed job and have the nerve to pat themselves on the back, that they do that much.

Makes me wanna limber up my wand, turn the lot of them into Toads, so they have to replace them all and maybe, just maybe, their replacements, knowing the fate of their predecessors .. might try and do a better job !

Welcome to my nightmare

BB

Esta

Avoiding FM flares


Hello all, sorry I have not posted recently. I have not fallen off the face of the planet 🙂 But have been busy and fighting off an FM flare, all at the same time. I say fighting one, as most of you with FM know, that you can feel it coming on and you do your best to stave it off.

What I call, letting the dragon sleep. It’s like we all have this huge sleeping dragon, with anger management issues, curled up somewhere,  that we hope, stays dozing away. Since no one in their right mind would walk over and kick it awake, as it’s a foul tempered beast and the first thing it would do, is take a few bites outta us, and walk all over us in the process.

So it begs the question of ” how do we stave off a flare ?”  These things and many more…..

Take the time to rest: Means just what it says, just do it and never mind the voice in the back of your head trying to tell you otherwise.

Don’t wait till the crash before you do something: As in do not wait until the last moment, before you take preventive steps.

Postpone or get rid of unneeded tasks: Just what it says, if something does NOT need your direct participation, then don’t do it.

Delegate: Again, just as it says, hand things off and  go do what you need to do, in order to avoid forced down time.

Plan things: This one might be obvious but there is nothing more energy wasting than a poorly thought out activity, no matter what it is, so get your act together here and your body will thank you.

Know the things that make you crash: We all have our personal “triggers” if you will. A great many we share in common but some, some are very one of a kind to us alone. Figure out what they are for you, and avoid them.

Acceptance: Face some facts, flares are going to happen, it’s a given, so beating yourself up for having one, is not only pointless, its a recipe for making the flare… worse, not to mention, stay longer. So do not do this to yourself.

Leave some flex room: Life doesn’t have script. If at the last moment we need to change things, based on how we feel right now.. then do it, change it. Do not just keep right on, with whatever it was, if you are not up for it, as you will pay the price, in pain.

Ditch the stress: I think this one is pretty self explanatory 🙂

Learn when to say No: Tough one for most of us, as we tend to feel guilty if we say no. But let’s again face some facts, we do not have the fund of energy we once had, period.

So we have to ration what we do have, and that often means, saying no, to a great many things. If in doubt as to what you think should be on the NO list, refer to Postpone or get rid of unneeded tasks:

Now, on my site ( see side bar for link ) you will find a more detailed, and less personal description as to what these all mean, as well as many others, but in basic.. this is how it works, this is how you work around the flare, on tip toe if need be, which is where I have been for a while. Which meant that this, my blog was one of the things that had to go on the list of…. later.

But I hope now that it is back, I can post more often, but…. one never knows 🙂

More soon

Esta

Feeling half way human and running on empty. FMS


Feeling half way human today, for the frist time in weeks. It’s so odd, that we see a day where we are half way alright, as a good day ! I guess FM does one postive thing for us, in that it forces us to be appreciative of small victories, that we otherwise might ignore.

I have been running on sheer nerves and fumes for weeks now it seems, to the point of literally having a major flare with the “shakes” for at least the past week or so. If you have never experienced this one yet, count yourself blessed.

As it’s where the body and mind are so tired, that you find yourself having purpose tremors when you go to do things, often to the point where you cannot do them, at all, and your brain is so overloaded, that even a sudden noise is enough to make you jump out of your skin. You cannot think or process anything worth beans, and your confusion level skyrockets.

You bash into the walls, as your coordination has completely gone to hell. What little of it we have even on a good day. You do not sleep, as you literally cannot, as neither brain or body, will shut up long enough, to let you.

It almost goes without saying, but I will say it anyway, your temper gets more than a bit testy. As I am sure my Mate could attest to 🙂 I know damn well the people in the half a dozen medical dept’s I have either been in or talked to in the past weeks, know it for a fact, unless they are totally tuned out. ( I think some of them really are tuned out, but they are due a major wake up call and I plan on seeing to it, they get it )

This is a flare to the point of sheer flat out exhaustion. You are so tired, mind and body that you can barely function and things just start not to work, at all.

Now, I pride myself on the fact that most of the time, I can manage to work around most things FM throws at me. But between the extremes of weather and much added stress and strain, this time … not so much.

This time, just not enough reserves to deal with things outside of my direct control, my healthcare being a major one, and then to top it all off, have to step around the rocks that FM tends to toss in my path, at the same time, and I have tripped over a whole mess of them. I have the bruises to prove it !

But, finally, seeing a corner turned i think, ( crossing fingers ) and hoping I can regain the momentum, that normally keeps me going….

Welcome to my world 🙂

BB

Esta

At War with my HMO.. again !


Well, back to a war with my HMO. After taking two mts to bloody find me a Chiropractor, allowed 3 “office visits” only, which means no X rays, no therapy etc. Now they dare refuse to permit anymore as the file doesn’t show it’s medically necessary !

Now mind you, I have no doubt he would have dearly loved to X ray me up one side and down the other, but they would not have paid for that, so can hardly blame him for the lack. He did give me some minor treatments anyway, even though he was not really being paid for that. Yet when he asks for more… they say no, because no proof of need has been show.

This is a real cart before the horse situation here, in that they will NOT pay for the diagnostic workup, yet will deny me seeing him, for lack of it. So its war, yet again, from his end and mine. As the reason I was sent to him in the first place, was well documented.

I have already seen a nero doc about this, he said see the Vein specialists. OK, saw them.. they told me, nope not the blood flow, see a Chiropractor. Now I have to ask a stupid question here, how much more proof do they need ?  Almost a year I have been at this mind you and then after all that, they up and say, it doesn’t meet the “needs” test.

Ready to flat pull out my hair here !!!

BB

Esta

I hate Doctors, who think we are stupid !


Well, finally got the surgical consult I wanted on the GI issues, but knowing so much about the possible reasons why, almost backfired in my face. And had to put down a smart ass resident doctor in the process.

I was not in the best of moods, when I finally got back into the offices for my appointment, as my time was slated for just after lunch, it was 5 hours later when I finally was taken back. I had made my displeasure at this, VERY obvious.

So just to save time, I ran down just what has been happening, what has happened before, re surgeries the results etc. and my personal thoughts on whats creating it all now ( Which my PCP by the way, agreed with me ), not to mention what I believe should be done about it.

The intern asked, what has become an almost normal question of ” have you had medical training ?”  As, the fact is, I do know a great deal on medical matters, in particular as pertains to whats wrong with me and I refuse to play stupid about it, to pander to some doctors ego.

In comes the resident the intern went to fetch. She and I got off to a very bad start when she walked in and said ” I see you have done our job for us, by diagnosing yourself”

No, I did not bash her upside the head ! Even though I felt like it.

But I did run down everything and more that I had told the intern, she got less and less belligerent as the recitation went on. To the point where she was forced to agree with me, that I was very likely, right. 

Now I am thinking to myself, where in the hell does she get the gall, to come in and talk to me like that ? It is hardly the first time I have run into a doctor who think that we, as the client are supposed to just sit there and listen to them and have NO opinion on the matter, whatsoever. 

Let’s face it, we have the time to research things, and we have an insiders view on the problem, they have neither. We not only have the time, we have serious motavtion to have a good understanding of what is going on with us. 

Facts are facts, anyone with any disorder of long standing, who has been A: treated for it a long time and or B: has spent literally years studying and researching it, very likely, honestly does know more about it, than the doctor does. As they tend to specialize in just one aspect, we on the other hand have a much broader education on the matters at hand.

And it’s damn well time a few in the medical profession woke up to the fact that no, we are all not as brainless as practice dummy’s. We might not have MD behind our names, but we DO know a great deal about whats going on inside of our own bodies, and we have very informed opinions, and it’s about time they respected that fact.

More soon…..