Archive | June 2011

Gender differances in testing for body ability ?


Not much for me say today, at least not on me, which for us with FM, is a good thing 🙂 as it means, nothing major, went wrong. We never think that we will ever hope, for uneventful days, but we do if we are wise and we savor them.

So what did happen for the day ?  Well, the mate came home after hours spent being tested 6 ways from Sunday, only to find out pretty much what they already knew, but now, they have proof. More therapy is in the works for him, as well as, yet another step has been made, towards his retraining.

He has a gauntlet of other tests and such to run here shortly, as they said the next set could literally take days. A years training, at the very least is being offered, with possible support monies. So we will see.

What I find interesting, is they are spending much more time and effort,( not to mention money ) testing this, that and this thing over there on him, just to get retraining for him, than they did for me, to get disability.

Things that by rights, they should have tested on me, as it might well have settled the question of “was I able to work”, the first time I ever applied for SSI over 10 years ago. Perhaps it is because he is a man ?

The so called doctor that I was sent to years ago by SSI, seemed to think, since I was able to stand up, see lighting and hear thunder, and that I walked in the door on my own two feet, that I must be fine. He even had the nerve to say, I was in “pretty good shape” and I thought to myself, as compared to what ? A three legged lame donkey, with knock knees, who is a 100 years old ?

Even the testing this time around for my new SSI case, was nothing near as extensive as they are doing with him and I have to ask myself, why ? We are of an age he and I, so it’s not that. I did manual labor for many years, just as he did, so it is not that. His health issues, while serious, save for one area that was injured, are more internal matters, than body mechanics, yet they are testing his body ability, to a very fine degree, whereas for me, they did almost none.

Even with all of the tests, x-rays and other full batteries I have had done in recent years, none of them even come close to checking any body mechanics, other than, at one point, during an “occupational assessment” I did the same carry weight test, as he did. But that is the only similarity.

But, all of that is past now, save for a time or two of reviews, which, given as I am gathering more diagnoses for this and that, like most women collect shoes, I do not think that will ever be, an issue again, but it still makes me wonder, why there is such a disparity in the testing phase ?

More soon…

BB

Esta

How the Health care system makes it hard to get help


Some days, it feels like the medical system, doesn’t WANT you to get help.

For example: Still fighting to get a Chiropractor, but at least, after many weeks and phone calls, I have a shot at it, but again, I have to get yet more paperwork from my doctor, the same one who approved it, over a mt ago.

In short, I had to find one on my own, as no one at the place that runs my HMO, had clue one of what to do, when none of the ones, on a very short list, were available. And I cannot help but think, what if what I needed was something dire ?

Another example: Almost a mt ago, durable goods were ordered for me, but..  again, delay, they need paperwork, and they have asked my doctors office for it, over and over. With them calling me, to ask me to try and get it for them.

Only for me to find out today that the medical record department, is off for two weeks, and where is the paperwork I likely need delivered to them  ? I am willing to bet it’s sitting behind a locked door, with no one home, to process it into my doctors hands, until they get back from wherever the clinic itself, sent them.

This was not due to illness or even a vacation mind you, the clinic itself, sent the main medical record keeper, off somewhere else. Likely a budget cutting move, so they could spread out her services to more than one clinic.

I found this out, as also today, I tried to leave paperwork and a message for my doctor with her nurse, only to be told that no, it has to go through the medical record dept.

( Which is new, as I have left my Doctor many messages before, but, she’s got a new nurse whose a stickler for the so called rules, I guess, although why anything has to go through medical records, first, is beyond me, as that just delays anything you need done. If medical records needs a copy, they can get it after the fact, to my way of thinking. ) 

I had to get the clinic social worker into the game, ( whom I have come to know well, she growls rather well, to get things done )  in order to make my Doctors nurse take the papers, at all, by having someone besides me say that no, it cannot go through medical records, as there is no one there. Which the nurse of course, did not know.

This is hardly the first time I have run into brick walls, over and over, having to chase my own tail, and waste many hours trying to find someone who knows how to resolve the problem.

For the husband, it’s the same thing for social services, dept A tells him that dept B deals with that, only to go to dept B and get told.. oh no.. dept A deals with that and so on… 5 hours of his day gone, to really no proper purpose, other than to keep a mess of pencil pushers in THEIR jobs, but he was no closer to anyone helping him find a job. And it gets worse, as some of the things she told him, made even my jaw drop, and I thought I had seen it all.

In short, if you need healthcare, no matter how your paying for it, short of cash on the barrel, you are put though endless hoops and needless delays, all to keep a mess of record keepers, employed.

They will tell you its to prevent fraud, however, since fraud is more rampant now, than ever before, they have stopped nothing with their tactics. All they have done, is make it harder for legitimate people, to get the services they need.

So got a few things at least in the proper hands today, now I will have to ride herd on everybody, to see it all done … for someone who is already ill, this is downright unreasonable that I have to do all of this, just to get the care I need.

More soon…

BB

Esta

Fix it unitl it’s broken, SSRI medications and FMS


Computers can be downright hateful. It seems that every time you update one thing, you wind up having to update others, as they are now incompatible. As not all updates, are an improvement. Like the drug companies, and their so called, improvements to medications.

Now, that is not to say they should not make new drugs or improve on ones they have, as they certainly should. However … If you have something that works the way it is, dang it, leave it alone !

Always looking for “new and improved” on the drug market, which, as anyone with half a brain knows, that generally means, a whole boatload of new side effects.

Example: It is not enough to have drugs that are SSRI’s anymore, no, now we have ones that also mess with norepinephrine, so they are SSNRI’s.. it’s called just new ways, to mess with your head, literally. The main chemicals  in our heads are:

  • Amino acids: glutamate,[2] aspartate, D-serine, Îł-aminobutyric acid (GABA), glycine
  • Monoamines and other biogenic amines: dopamine (DA), norepinephrine (noradrenaline; NE, NA), epinephrine (adrenaline), histamine, serotonin (SE, 5-HT)
  • Others: acetylcholine (ACh), adenosine, anandamide, nitric oxide

Example of a new medication, my doctor wants me to try, for sleep called an (SARI)  Now, given my sleep issues and the fact that this medication also raises your blood pressure, which mine is too low, and it is highly sedative, I can see the idea behind this.

Still have not tried the things though, been sitting on it for weeks. Now, why do you ask ?  Well, I have spent a great deal of time, checking it out first, as I do for any new medication, and take a look at what just a short write up, on them, looks like…

“Due to the short half-life of trazodone, if a dose is taken at night, mCPP ( meaning by mouth) would be present in the body during the following day, causing symptoms such as anorexia (behavioral symptoms), anxiety, hypolocomotion, headache, and depression”. .. and as if that were not enough.. then you get.. this

“A person who abruptly stops taking trazodone, even in doses as low as 25 mg (common for use as a sleep aid for people with anxiety disorders), may experience adverse mental reactions such as emotional instability, depressed mood, and suicidal thoughts.” and of course the list of side effects, is as long as your arm

Meaning that if I find that it doesn’t work for sleep, I can’t even just stop taking the dang things, but have to wean off of them. Scary to say the least, as with this one in particular, the need to wean off slowly, tops the chart compared to other SSRI’s  as the body can literally, go crazy if you don’t wean off of them.

But, given as I have done far too many days of late, where I do not sleep until the sun is high in the sky, I may just have to give them a try. But I will not put up with a mess of side effects and or the next day hangover, for long if that turns out to be the case.

I have been on just about every type of antidepressant, there is, with little or no benefit I might add. I have yet to see any real reports on where their most recent efforts in that regard, are any better than the old ones.

So by weeks end, I plan to give it a try, and I will be very very critical of the results, as in, if I don’t drop off to sleep like a rock and stay there until morning and wake up feeling like a human being, they are getting cut in half, then 1/4’s, then dropped entirely. If they are able to be cut down at all, as some medications, are not.

In which case, it will be a rushed call to my doctor to phone in a lower dose script, so I can wean off the things.

Oh and I have to mention at this point, that the one thing pointed out on the medication, the make you sleepy effect, which is what it is being given to me for, tends to wear off, in pretty short order. In which case, it means it might work for a few weeks and then stop working for what I am taking it for, at all.

I am not trying to ill wish the medication, I hope it works, I really do, but I have been disappointed far too many times with such things, to  allow that small hope, to get any bigger.

As well as, needless to say, I have NO desire to make how I already feel, worse ! I told her I do NOT want anything that is going to mess with my brain, but in this case, did she listen ?

And if they fail, and I will be honest and say that I expect that they will, as I have yet to see even one, of any kind of this sort of mediation, work. At least, not for long, so when they do fail, right away, or a few weeks from now … then perhaps she will give me what I asked for to begin with, which are some real sleeping pills, for the times when I get like this, and I cannot sleep, at all.

More soon..

BB

Esta

Update to this: The SSNRI’s were a no go total bust, as expected….. but, quite by accident, we found a combo that works pretty well. I had what I thought to be a rash, rather nasty one ( turns out it was bug bites ). So, Doc ordered me up some Visteral, some beta blockers, a muscle relaxant and finally added a real sleeping pill, Ambien. And lo and behold for the first time in more years than I care to count, I am getting some real sleep.

Nothing makes me GO to sleep ( nothing would, short of something strong enough to knock over a Bull Moose ) but, with this combo, taken once I do lay it down, I am sleeping for 6-8 hrs, without all the wake up every hr or so. We  recently had to up a few of them to slightly stronger, as over the past year or so, their effect has waned a bit but, doc had no problem doing that for me and so for now… still getting some real sleep and it has improved my FM over all… it makes an interesting footnote to the idea that lack of real sleep is in fact our  worst enemy.

My Brithday :)


Well, today is my Birthday, so I do not plan on doing a whole lot, of anything 🙂 56 times, I have been around the sun. And so many life experiences in those trips. For which I am blessed.

Good things, not so good things, even the boring things, all combine to make for a very rich life. I could start writing now and would not be done the day I pass on. So I won’t even try, at least, not today 🙂

So, just taking a moment to ponder all that, and enjoy it, See you all soon.

BB

Esta

FMS flares and excessive use of body resources


Well, still feeling a bit like roadkill, but on my way out of this dang flare, finally. I think just staying in bed until several hours after my alarm goes off, the past few days, has helped that. Un-refreshing or not, sleep can be a major relief from an FM flare.

I think the main reason is, that while asleep, we are making fewer demands on the body, so it can use body resources to tame the flare, rather than use them all up, to try and do our day to day tasks. Resources are finite for day to day work on any day, but during a flare, they are almost nonexistent.

What are these resources  ? Energy, which is created by a variety of places. Lipids ( fats ) in the muscle cells ( of which we have a sparsity of to begin with ) Calories burned, which depends on a gut that is A: processing things correctly and B: Passing the energy onto the blood stream. The O2 hand-off, from the lungs and blood stream, to activate all of the above. So, just to DO anything at all, on any day, a lot of things have to be in working order.

Now, on a “good” day, such systems do not work very well for us, but during a flare, they almost do not work, at all. But repairs must be made, so the body uses up what few resources, are normally available, in short order.

However, more is still needed, so the body goes hunting for it, most often taking it from the bones, the teeth, hair, anywhere it can find things that it can convert into useable body resources to repair the damage being done.In short, it is feeding on itself.

This fact is why most of us have low density of our bones, often have poor teeth, straw like hair, thin brittle nails and damaged skin. It is also is why during such flares, every alarm bell we have, are all ringing at once. As the body is on full alert, doing some rather extraordinary things, just to try and minimize damage, and allow for some functionality, but it is stripping the body almost bare, to do it.

So the bottom line is, often the best thing we can do, to help  the body along, and ease our own pain, is to sleep. Sleep and let the body do what it does best, which is heal what it can. Without us, making more demands on it.

May your flares be few, and your rest be blessed

More soon….See an expanded version of this post on my site here

Esta

The worst kind of flare and FMS


Well, I made about a million phone calls, and got my car back from the shop. Yeah ! So a few things going right for the day. Tonight we have ritual, for Mid summer, and for the first time in a long time, I need it. It has been a pretty stressed out few weeks. Flare from hell going on.

Tired, does not even begin to cover how I feel right now. It is like someone staked me out under our hot Texas sun and let me bake for a week. Crisp fried to a crackly crunch. As far as my nerves go anyway. I have not had the shakes, in a long time.

Now, those of us with FM, know exactly what I am talking about, but for those of you who don’t, what that means, is the system is so overloaded that: Noise makes you jump, lights stab your eyes, your hands and limbs literally shake, when you try to use them. A mouth like sandpaper, skin so sensitive, that even the wind blowing on it, makes your nerves  jump. Muscles under the skin do this little dance, for no good reason … and all of the tingling, crawling sensations it’s possible to have. And of course, the pain is way over magnified too.

Now the why of all of this is simple, its the nervous system, gone completely haywire, over amplifying  signals all over the place, to where nothing is being felt even close to normal ( or at least, as normal as it gets for us with FM ), as its all in major overdrive. It is the worst kind of flare one can have and I am in it. With little to do, but grit my teeth and hang on, until it passes.

The pain all of this brings, thankfully, I can at least tone down, even if I cannot get rid of it entirely, as my doctor finally gave me some real painkillers, wimpy though they maybe. I take two of them at once, as one at a time every 8 hours, doesn’t even put a dent in it ! But I behave, and only take two in any given day, which is just what she allows for.

So taking it as easy as I can on myself here, which is not saying much, as there is a lot to do, and I will just try and hang together long enough, to see the things done, without working myself right into my bed.

Actually bed sounds good, right about now… but “things to do and people to see” as the saying goes, so will have forgo that..for now.

More soon..

Esta

Memory issues and FMS, why the system fails


Well, I have a stack of a “To do ” list…again. It seems I no more than clear my desk and a dozen more show up. It is on the same order of when you kill one fly, 10 more show up for his funeral ! 🙂 But behind it all, is memory.

Web work to do, Doctors to call, specialists to call, the good old fashioned social services screw up, to where I need to call to find out what the heck happened sorta deal. Call my mechanic to find out, okay, when are you going to be done with my car ? 

And again, all of this seems to pile up on the weekend, when as far as calls go, I cannot do a thing, about it ! This does not even take into account, any day to day tasks, that might need doing, that I need to remember.

Anyway, whats my point here ? The “To do” list goad, the one that seems like a nasty boss, standing over our shoulder… with a stick. Now, should we feel that way about it ? Of course not, but do we ? Rather often yeah, we do.

Now just about everybody does this, getting a bit stressed about remembering things, but we with FM, in particular. For one simple reason … Memory issues.

Let me put it this way, our short term memory can be so bad, that if we cannot do, whatever it is, right now, then the pressure is on. As now we have to try and figure out a way, to make sure we DO it, when the time for being able to do it, shows up and HOPE we do not manage to forget about it entirely, in the meantime.

My desk is always littered with post it notes, or full pages, if it is detailed. Reminders on my computer that pop up and go hey.. have you done this yet ? Telling the brain, over and over, so that it has even half a chance, of being retained.

Now, what gives us this problem is pretty simple. It is two fold, as short term memory is all but gone. It is gone for the fact that the synapses that process information, are being interfered with.

The pre fontal cortex, the part of our brain that is responsible for short term memory, is rather busy  most of the time. Doing what ? Trying to handle pain it is assumed, as when you take care of the pain, the lobe is not always so active, and the person then retains things, better. They have tested and proved this, using brain scans both before, and after administering pain medications. Then testing recall.

But, even if we do manage to get it into long term memory, there is problem there too, which is tied to sleep issues, as things basically gell in the mind, as we sleep. Whatever was processed during the day, gets “filed” away at night, while we sleep.

And since we do not sleep well,  and have disrupted sleep, we do not “file” things properly, so we have issues trying to retrieve recently stored information. It normally takes a jog to the memory, or some kind of association, in order to find the information, at all.

( Some days I swear I want to find the person inside my head, whose job it is to file things, and fire em ! )

But the bottom line is, the normal routing of desired thing to remember, to short term memory, to long term memory, to retrieval of that memory, doesn’t work reliably anymore. I say reliably, as some days, we seem to have no problem at all, but on others ?? Forget it ! And I mean that, quite literally.

So, what does this tend to do to us ? Anything that cannot be done, right now, almost sets the mind into a state of near panic, if the matter is important. Which of course, does not help matters, one little bit. As now we are stressed as well, which can further impair our memory.

A real nasty state of affairs, anyway you look at it. As the ONLY part of that, we are in control over, is not letting the need to remember, stress us out.

The rest, is pretty much out of our hands, until and unless the medical profession, finally comes up with pain killers that work well for us that we can take on a regular basis, without turning  us into zombies and/or ones that impairs our memory, even further.

Right along with sleeping medications, that allow us to get normal rest. Not just get eight hours in a night mind you, but have normal cycles and sleep patterns, so that things can get “filed” correctly.

Then maybe, just maybe, we might get our memory … back.

More soon….

BB

Esta