Archive | July 2011

Some progress on the medical frustrations and yet another fight


Well, I finally have the chroipartocr nailed down, and approved, at least for 3 vists. My doctors office is at last, taking action on the paperwork that is needed for my durable goods. 

Almost two full mt’s of phone calls, visits, letters and aggravation later, I might finally be seeing an end to this saga. Now, with my appointment with GI to discuss what needs to be done regarding my GI issues, I fully expect another fight. As the fools did all the tests, but did absolutely nothing, with regard to even investigating the matter further.

This, unforgivably, is rather typical. Unless there is some gross issue apparently, the tests are classed as ” good” and ignored. Now, this is despite the fact that I went in for such testing to check on two things. Hemorrhoids, which have become a major problem, of which they freely admit are there but they have made no move, to do anything about them.

Coupled with the gut itself is very plainly twisted, and causes great pain and problem, yet this was also listed as “good” Now I have only one question, if all that is ” good” I would bloody well hate to see what they considered bad ! Having IBS on top of malfunction due to everything being twisted and bound up, is not fun, let me assure you.

Needless to say, I am not taking this well, as to my mind, both issues need to be addressed. In one case, it would be a simple day surgery and one hopes,  the end of the problem. But it seems they would rather leave them be, and let them do again what they have already done to me once, which was nearly bleed me out, until I was finally able to stop it, on my own.

I staved off going to ER over it, and perhaps I should not have, as then I might have had their attention. On the other issue, I repeatedly hear things like ” well surgery creates that” as if nothing can be done about it. ( Scar tissue and adhesion’s ) Which I know full well is a bogus statement, as I had such issues, from other causes before and  the surgeon was well able to remedy the problem. As what it takes, is one who gives a damn.

What I am hearing, is that they see these issues as minor and unremarkable. Never mind the fact, that both are a daily source of pain and difficulty. 

Now, the main reason for this blow off, is fairly simple. The hemorrhoids as I said, are a simple matter, but since no one SAW me bleeding every time I moved for days on end, they are basing their prognosis of “good” totally on visuals.

Even the Doctor who did the frist exam asked me, before he even attempted it ” if you have had them for years, why are you bothering to complain about them now ?” He really did ask me this. I was rather curt in my reply to say the very least.

So I can assume that he is the major drawback. He is also the same dim wit I had to have nearly a fit to get something for the pain the proceeduoe caused, in order to be allowed to leave, at all. As you were not alowed to leave, until you felt well and I certainly did not, but I had to threaten to leave AMA in order to get his attention to do anything about it.

Since he could not complete the intended prodeeure, others were ordered that clearly show the “gut twisted like a corkscrew” I was not only told this, I saw it with my own eyes. This by the way, is why the other scope process, failed.

Now, I have a pretty good idea on what has caused this and my PCP agrees, but what needs to happen is to look at the outside of the gut, in order to confirm that. Which of course, neither test, did. As in both cases, what they were looking at was the inside of the gut, with shows no blockages or polyps.

Which I guess is where the so called ” good” comes from. So its back to the fray and go at loggerheads with some medical types in a few days, to force their hand to DO something about both issues. Sigh…I am so tired of having to fight lame brains, who do not listen to what you tell them… but time will say how hard and how much I have to rattle cages, to get the matter, done.

More soon…. 

Known VS Unknown Environments and FMS


Known VS Unknown Environments Why we tend to stay home. Isolation or control ? I happened to hear a comment the other night on a movie about a blind man.  It was his Mother telling his new girlfriend ” do not base his ability on  what you see him do at home, in an environment he controls” And it rattled  around in my brain, until I realized, just how that applies, to us.

A large number of us, prefer to stay at home … period. To the point where  some of us, are downright agoraphobic. The line from the movie was not the  first time I had seen this effect, in action. As I recall seeing the same  effect, with those I used to teach.

I was a one on one life skills teacher for persons with Disabilities.  I noticed, that when they were at home ( once they got used to the apartment ) they seemed to do pretty well. It was when I got them outside of that  environment, that their over all state and general performance, suffered. 

Once they were used to certain stores and the like, their abilities improved,  at least in that place, but if I took them somewhere they had never been,  again, performance suffered.

So I had to ask myself, in what way does this apply to our tendency to be ” stay at homes” ? Now, it is a given that often times, we just don’t  have the energy to face the chores in the outside world, that is nothing more than fact. But how much of our reluctance, is also due to the fact  that we have NO control over that environment ?

Sensitives : For example; If here at home, it is too hot or too cold, I can walk right  over to the controls for the AC or heater, and change that. I can strip down or dress warmer, in short, I have some direct control. But what if I am out and about ?

Now, I am stuck in whatever I happen to be wearing, having to  deal with often sudden shifts in temperature ( say from the AC in the car, to out in the heat to now back in the AC in the building ) and that’s just  one aspect, the ambient temperature around us.

Light: Now I don’t know about you, but the horror of florescent lighting  is enough to drive me about bonkers. Yet, such lighting is in most public buildings, or doctors offices, so yet another thing, my body does not like, and reacts rather badly to, that I have no control over. Not to mention, we do not do very well in bright sunlight either.

Rest to action phases: Now, at home, if I need to rest, I can just stop  whatever it is I am doing on most days, and go lay on the sofa and watch  TV or read a book. I can even go take a nap if i want. When I am out ?  None of those things apply.

Smells: At home, we can to a high degree, control what we smell.  Outside and going about, we have little to no control over the major  assault on our senses from all manner of things, from the detergent  aisle at the grocery store, to the woman sitting next to us on the bus,  who bathed in her perfume. Let us not even get into the nasal assault  we suffer when walking into any doctors environment.

Noise: Now this one I know for a fact is an issue, as I wear an MP3  player around my neck with ear clamp headphones, literally everywhere I go, to block out the noise all around me as any failure to do so, and I come  home even more wiped out, than if i didn’t block it all out.  And again, in my own home, most of the time, unless the TV is on,  which is rare, the only noise is the AC running, as total quite,  is preferred. ( Which is why noisy neighbors about drive me crazy )

Desensitization or over excitation: Now some might say, we are creating our own problem, by exercising such strong control over our home environment, as it does not prepare us for the assault on the body in the outside world. And in my personal case, they might even  have a point, as in my current situation, I have almost total control over  most aspects of my home environment, but what about those of us, who have a  house full of kids, husbands, wives, pets etc ?  Granted, even they have some greater control over their personal space,  but not nearly so much as I do … yet… they suffer the same issues  as I do, when they go out and about.

So what are we really dealing with here ? A case of, we shelter ourselves  and therefore suffer more when we go out, or a case of we would suffer even more, if we did NOT control our personal environment, as then we  would have NO respite from it ? Even in most of the rules, regarding persons with disabilities,  there is always a clause stating that they should have in all cases,  where possible, the”least restrictive environment “.  

In fact, in persons with the more common disabilities, there are major  protocols in place, to reduce the distress of the shift from a controlled  to a non controlled environment. A read of the research shows clearly,  that you can find notations to health professionals, in plenty for just about everybody.. except us. Now, the more severe the disablement, the more  complex the protocols, but to my way of thinking, perhaps there needs  to be some created, for us.

For example: At the doctors office, less bright lights if you please,  which makes it a need to…. Lose the waiting around for hours in crowded noisy waiting rooms,  put us in a private room to wait, with dimmer lights Let us sit with our feet up if we need to, as for most of us the forced legs  down position for hours means, we will fall down when we go to get up. Simplified forms to fill out or have the nurse just ask the questions  and fill it out for us Bring us warmed blankets, if we have to wait, so we don’t get chilled,  as most doctors offices are like refrigerators.

Just these things alone, would make what can be a horror of pain  and distress, a typical visit to a doctors office, into something  a lot more comfortable to endure. And I think it is high time, we started asking for them.

More soon….

How we pay for goverment services, with time spent


Well some very good news and sorta good news going on this week. I am still waiting for all the things that have been on hold for almost 2mts now, but some progress has been made.

And the mate finally got approval for funding, at least for most of his retraining. As well as, he blew a few minds today, when he not only finished the first test they gave him in record time, he aced it as well. So they were rather impressed 🙂 

The sheer amount of time both of the above has consumed to even get to this point however, is astronomical. Now, anyone in our shoes, who is having to depend on any federal or government agency for aid to do anything, knows full well what I am talking about. As the price we pay in time, and sheer frustration, is almost beyond counting.  

This week coming up alone, will mean a ton of phone calls for me, and perhaps a trip to the medical records dept, to snap at a few laggards, personally, as by and large, they are the hold up on my part.

And he will spend hours upon hours with yet more body testing, days worth for him. Although, why they even need all the extra testing now, since they do have approval for at least the bulk of his retraining, makes me wonder. 

It could come to serve us later down the road, so I will not complain too much, but I cannot help but think it is yet another agency, who is making sure they keep their jobs, with the veneer painted over it all of so called “helping” others.  As all the testing is costing the state 1000’s of dollars.

( And we wonder why the state is broke ?)

But, on the side of blessing, some progress has been made and committed to, now it’s a matter of following through on all of the steps needed, to see it completed. But it has been a very wearying serveral mts, for us both…

Welcome to my world.. 🙂

BB

Esta

Up all night and FMS


Well, good news and bad news today. The good news is, I will not have to mess with my food benefits again, until 2013.. so yeah 🙂 The bad news is, I am back to being up all night.. sigh….

This is the thing I wanted real sleeping pills, for ! I am racking my brain here, trying to figure out just what is setting this off. Even with my other medications,  I am tossing and turning like a top and having to get back up, repeatedly.

Now mind you, this is despite the fact that while I am up, reading, watching TV or whatever, I am sitting there falling asleep, but .. big but here, go to bed and lay down to try and keep that going … and forget it.

I think its the back problem again, as what seems to be the worst, is my lower legs, cramping up, in pain, etc. Enough to where the problems, wake me, regardless of how tired I am.

Which just pisses me off, as I should have already been seeing a Chropratctor over this. However, if you have read my other posts, you know how badly that idea has gone. It is making me real short on my temper ( born a red head and you know what that means )

Now, I know full well that getting upset about it, is not helping matters here, but it is very hard not to, when the delay, is due to other peoples greed or their stupidity, and I am the one having to suffer for it.  

I can deal with just about anything, if I know that all that can be done, is being done. It’s when you have situations like this, when what would help, is not being done, for no good reason. That just raises my hackles up. 

But, I need to get over that and chill, as that is NOT helping my sleep problems, in the least. 

Hail to all my fellow Vampires of the night and may you rest better than I am

BB

Esta

Saber rattling and medical frustrations and FMS


Well, I did a fair amount of saber rattling today, as yet again, a whole host of medical things, have yet to be done, mostly paperwork and referrals, that to me, are important but I seem to be the only one, who thinks so.

Now what is the most aggravating part, is things like my doctors office for example: Most of the people in my doctors office, either A: Do not speak English well enough to even understand what I am saying, or B: Act like they have no idea, what I am talking about, even with the paperwork right in front of their face.

This concept is further complicated, by my HMO, who has people within, who are so lame brained, they cannot look beyond whats in front of them on their database, and see why there is even a problem here.

Allow me to do a brief recap, over a mt and half ago, my doctor ordered some durable medical goods for me. Now, 6 weeks later, the paperwork needed from her office, still has not been given to the suppler, who are themselves, very frustrated with this as they have asked for it over and over.

If not for how good my PCP herself, has been to me, I would change clinics, entirely over this gross neglect on the part of the medical records office, who is the one who ultimately handles such things.

A neglect I hasten to add, that could easily result major damage or even death to me. I made it very clear to the supplier today and plan to make it clear to my clinic come Monday, that if anything at all happens to me, for their neglect, I will be suing, somebody !

( I have, among other things, Neurally mediated hypotenson, which means, in places like the shower for example, I get dizzy and have nearly fainted on more than one occasion. Now I leave the visual of me falling out of the shower, and onto the comode, counter top etc, up to your imagination, but lets just say it is highly likely I would, at the very least, break something, if not outright die as a result )

Now, at this same time, orders were given for me to see a specialist, however my HMO has one, a very short list of said doctors and two, none of them on that list will see me, without forcing me to change my PCP. Now, this disregards their deal with my HMO, all in the HMO agree to that and formal complaints and other actions have been filed. 

However, what topped the whole business with them today, is the fact that one of them called and left a message for me, saying of a doctor they had found for me, an hours drive away!

Now, if this doctor were a one time shot, ok, can see that, but this would be someone I would be seeing at minimum, once a mt for likely, years. Not to mention the fact, I already made it very clear from the start, that such long trips, are out of the question.

So yet another call to my HMO, and some good news finally, I happened to get one in my HMO, who understood the problem and went the extra steps and plans to do more for me, to get it done, or at least she will try. Now She.. I will present to her bosses, as the only one I have dealt with in their office on this matter, to date, who really tired to handle the problem.

Now, all of this was on my plate, yesterday… but I did not a thing about it, for one simple reason. I was so pissed off by all of this and over being forced to take some extraordinary steps over something so simple as some paperwork, that if I had spoken to or seen any of them … lets just say it would be as my mate said which was ” ah.. the security guards would be earning their paychecks ?”  as they most certainly would have, which would not have gotten things done, even if cussing a few people out, would have been emotionally satisfying.

But here is the most heinous part about this whole affair. I am a very sick woman, who has difficulty just getting through my day, on a good day, and this is how I am being treated by the very people, who are supossed to be helping me here ?

To that I say, not only is it uncalled for, with people like this for my so called freindly helpers, I do not need them as enemies, which is the ONLY thing that saves them from a very righteous wrath and yet all of these people, are cleverly disgused as so called.. health professionals. 

Tired of the whole damn mess

BB

Esta

 

Recovery time and FMS


Another laundry day ugh, but one of those gotta do sorta things. It always amazes me how tired you can get, from just doing one thing. But with FM, this should not really come as a surprise.

In point of fact, I did several things. But all of that just added to the load the body is already under on any given day of the week. How that looks is like this :

Lactic acid build up in the muscles as we are at the “threshold” just sitting there, much less makng demands on the body.

Caloric exhaustion. Which is just a fancy medical term for the body is starving. This is regardless of diet. IBS and a whole host of other issues create this problem

Homeostasis is shot:  Which is just another fancy medical word for all systems working normally and within certain parameters, body temperature, etc. Now for us, the body cannot adapt fast enough, to extremes of heat or cold. So being outside in our Texas summer or worse and the conditions in the Landry-mat to that and you have a body that is way overworked here. Add to that of course, dehydration.

What it all means in toto ? Is that when you ask the body to go out and do such work, under such conditions, it takes all you have, literally, to do it and then comes the recovery time.

I came home about 3 hours ago, and I am just now getting to where I feel even remotely, normal ( or at least as normal as we with FM, ever get ) In other words, it took me just as long to even start to recover from the labor I did today, as it took to do it, at all.

Welcome to my world

BB

Esta

Light and Hypothalamic issues in FMS


A dark and kinda dreary day out there, which is good, given how hot and bright it’s been. We with FM do not do well with bright lights. Some days I feel like a gremlin.

Or a vampire, but it is not our eyes, that really have the problem. There are some body issues, mainly from myofascial problems. Tear prodcution and the like but no, the main reason, has nothing to do with our eyes, at all.

Hypothalamic light reaction, is thought to be to blame. Now normally, what this part of our body does in reaction to light, is set our day night patterns. Our sleep patterns in particular. Now of course we know in FM that aspect is totally trashed. Hypothalamus-Pituitary-Adrenal Axis (HPA) Dysfunction is what it is called but that means in plain language, the Hypothalamus is responsible for all kinds of things in the body. But half the time, it does not work.

To that part of our body, we should be in the dark time still, and here comes the light and literally stabs our eyes, as to its way of thinking, we have not slept, so therefore it must be night time. It keeps trying to reset, what has been broken, but it cannot, so the eyes suffer.

This is not to mention all the other glands in that Axis, that are dysfunctional. So it is mainly a gland issue, not an eye issue and all we can do is protect the eyes, lubricate them. Until they figure out a way to restore that balance.

More soon..