Trying to get back to “normal” or at least as normal as it gets with FM


Well, things are half way back to normal in the sleep department, I say half way, as I am basically making myself get up at my usual hour, no matter if I have had enough sleep or not. Which I hate to do, but I really do not see as I have much choice here. I cannot just sleep the entire day away, when I have things to do. Warning… on a rant roll tonight, so just bear with me.

It’s already bad enough, that most nights my Mate and I, almost swap places in the bed, as I am no more than getting in it and getting half way to sleep, when he is getting out, but to miss him entirely for whole the day too ! Unacceptable. So no matter the cost, this sleep all day, has got to stop.

Even if it does mean, that half of the time my brain is fried, and my memory has gone completely to hell here. Everything that needs doing, MUST be done.. right now or it is not gonna happen. As mentally, I am running on empty here.

Now, if all that were not enough, I have a brand new issue. Does anyone else have tongue or mouth problems with FM ? For the past month and half and more now, my whole mouth feels like it’s sore. My tongue is literally cracked right down the middle, and has sores on the edges. Like I have been chewing on it, which is totally impossible, as other than to eat, ( which has been a trick lately as it hurts to eat most things right now ) I do not even wear my lower plate, I have not for years.

This is one of the issues I wanted to talk to my doctor about, you know the office that gave me an appointment, for Oct, when the last time I saw the woman, was in June ! And I told them why I wanted to see her, when I called.

And the glands under my arms hurt like all get out, every time my arms are down, you can literally see some swelling in some places. It all seems to scream some kind of immune system malfunction to me, but as to what could be creating it, or if that is even whats going on here, I have not a clue.

But such weirdness can happen with FM, as our immune system is most often going full bore, or you basically have none there is no middle ground here… and this, given all else that is going on, just might be the result of one of those times, that I really do not have much of an immune system, and the stuff showing up, is the result, but this could be something else, altogether, so I cannot just shrug it off.

Just because we have FM does not mean we cannot have something totally unrelated to it, going on too ! FM does not give us any immunity from coming down with other stuff, on top of FM. Is is hard to remember that, when FM alone brings in so many things that can go wrong here.. but any thing new, HAS to be investigated.

The back, legs and neck are still a mess and I have just about given up on the idea of a Chiropractor, as the fight to get the service, is just about too much. It doesn’t do me a whole lot of good, to add to my stress levels, just trying to fight my HMO over it, so I am gonna try for at least a PT as that, they might be more reasonable about.

Not to mention, the ears are both still acting up and still no ENT appointment.. as of yet anyway and I even put in that dang request, in writing ….well over a mt ago !

Sigh, some days, I just do not have the energy, to handle it all, and ride herd on my doctors entire medical staff, many of whom, are not doing their dang jobs !

Gonna have a word with Doc on all of that, as I am positive no one asked her if she thought she should see me sooner for all of this. The one I  seem to keep getting on the phone in her office, can barely speak English, so it’s a sure bet she doesn’t understand it all that well either !

To me, anyone who cannot speak English here in America, has no damn business answering a phone in a professional capacity ! Particularly, not in a Doctors office.

I think from now on, if I hear that voice, I will automatically ask for someone else, as I am getting dang tired of her mis-handling things, likely due to her own incomprehension of the language, both spoken and written, as she does not seem to get what shes reading, either.

Well, that’s enough whinge for one night, I am tired and need to at least lay down.. so good night all and may your rest be blessed

BB

Esta

Advertisements

Sleep still messed up with FMS


Okay, now this is just getting too weird. Went to bed at my usual time, was even starting to doze laying there, which is normally a good indication that sleep is possible. Not last night, I was up and down no less than 3 times. As I make it a rule, if I have been in bed for more than half an hour and still not asleep.. I get up. I was still up, when the mate got up at, past 9 am. This is about to drive me, insane.

To bed at 9ish am and up at 5pm is just not gonna cut it. As the mate so pointedly reminded me.. if it keeps on like this, if I happen to get an appointment for damn near any part of the day right now, I would be hard pressed to keep it. Hell, as stands, my entire dang day is gone… before I even get outta bed !

I do not have any until next mt, as the moment, but one never knows.  As there are several I want to have and have been pressing for that I would be very pissed if I finally got them, only to miss them as my body has gone  entirely off the deep end here, with the sleep thing.

Doctor is just gonna have to listen and pay heed, and give me some real sleeping meds for days like this, like I asked her for.. ( which when I asked last time, she gave me yet more anit depressants, which did make me sleep, right enough..for about 2 hours, then the nightmares started, several days in a row…. so in the trash they went ) This cannot continue!!!

Welcome to my not so dream land

BB

Esta

The long sleep insomnia and FMS


Well, I guess my body had had enough of this up all night bit, and I slept for almost 12 hours. In fact, the only reason my mate woke me, is I was getting behind on my meds. It has been a long time since the body has just said “okay, enough of this no sleep.. watch this” !

This is not the first time this has happened, but what surprises  me, is that it does not happen, more often. As one would think, that if the body is sleep deprived enough, it would do this, almost automatically, yet, it does not.

Now most people have experienced this, long sleep, at least a few times in their lives, often right after a period of prolonged energy drain. But it is in fact, yet another form of insomnia. As weird as it sounds.

Yet, such prolonged sleep does not bring the rest one would expect. In fact, it often brings a feeling of a slow brain, body and a general malaise, which has no real connection, except to the excessive amount of down time.

My mate often complains of this almost horrid feeling, if he has “slept too long”.

“Too much sleep can weaken your sleep system. Your body is not awake for long enough to absorb enough sunlight, get enough exercise or engage in enough tiring activities.

Your body temperature takes a long time to climb to normal in the morning making you very drowsy for several hours after waking. In fact your body temperature may not climb to its peak at all, so you may feel lethargic all day. This is because excess melatonin that has been released by keeping your eyes closed for a long time does not dissipate quickly leaving you feeling drowsy and drained of energy.

Too much sleep can actually weaken your immune system leading to lowered resistance to colds, flu or worse.”  Link

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