Doctors and certitudes about IBS ! Why do doc’s think they know more about us, than we do ?


Getting on my soap box to scream a bit about Doctors. I am sure I am not the only one to notice that Doctors seem to run rough shod over just about anything WE might have to say. Case in point:

Recently saw a mess of GI docs. Told them all about my gut issues and why I think they are happening. Their answer ? To put me on what amounts to 100 times as much psyllium a day as I already take ( never mind I told them that if I do too much of it.. I get cramps, diarrhea etc ) a fact I have learned via nearly 15 years of trial and error. Did the docs listen to this ? Answer.. NO.. and insisted that THEY know best.. 

Ok. fine I take the stuff and the laxative they gave me, the very frist day on it.. ( after I choked it down ) within the hour.. cramps, diarrhea  and pain..it took me over a week to get it to settle down and stop doing that.

However, since I did promise to try, I went back to the meds and cut it down.. long story short here,  and it took two weeks of misery to find out, that in order to prevent the kick off to diarrhea and more pain.. I have had to cut it down less than a 1/10 of what they want me on.  Meaning, about what I expected the stuff to have to be, in order not to kick the other reaction off, based on my personal experiences..

Mind you, I am not just cutting it down, just to prove I am right. I did it their way, they said I could adjust it if it gave me problems, and I have, as I had to. The gut is still not good, but at least not MUCH worse than normal.

Now, several things are in play here with all this. The first being their arrogance in assuming THEY and only they, know best. Well its “worked for a lot of people” just try it they say. The pills you take everyday of the same stuff, won’t work they say, as you cannot just take them and sip a little water… never mind I have always taken them as they are supposed to be, which is with plenty of water, they ASSUME  that I am like so many others who take the pills, and do not do it right. Again, did they ask me how I take them ? Answer, NO. I all but bit the docs head off for that one.

That is just more of the all too common arrogance in assuming that I.. know nothing.  Their assumption of the dosage of the stuff they gave me, is based on three meals a day + snacks. I do lucky to eat, once. twice a day, tops. I told them this, did they listen ? No. 

What makes it worst of all is.. for weeks of extra bloating, pain, cramps etc. there is NO improvment in how the gut works or the problems that drove me to seek help in the first place. Just a lot more suffering.

I told them then and will tell them again, it’s not about consistency, it’s about function. As what I went in for, is to my mind, mechanical, the gut simply cannot do the squeeze and peristalsis motion….and a fast look around with a scope, would prove it.

They keep showing me the damn xrays.. tell me that they “look” normal, since they are not seeing any gross pinches of the gut or deformities. Never mind the ones who DID the test told me the gut was “twisted like a corkscrew” but apparently that notation, did not make it to the report.

Again I tell them.. that just shows you the inside of the gut, not the outside.. which by the way.. in my opinion. is the problem and told them exactly why. ( mind you I have been through this once before with adhesion’s etc gumming up the works.. and will bet with 95% certainly. that is the case .. now ) A good 14lbs of them were removed from my gut some 20 years ago, after my ovaries had bled necrotic matter into the gut cavity for years, and the body of course, tries to encapsulate it. Note: after all that was removed, the gut worked just fine.

Now, move forward 10 years after all that was removed, and the gall badder went totally south, to the point of being black, dead and gangrenous. Which would have, of course, pumped all manner of dead and dangerous stuff into the area around the gut, I nearly died over it all, .. notice this is again the same issue that created adhesion’s the first time…. just the source changed. Again, I told them all of this.

Now, since that time. the gut has not worked right, and it’s getting worse, but it looks like I will have to beat them all over the head with my cane, to get them to do the obvious, which is take a look.

If they can prove to me, that is NOT the case, that nothing is binding the gut in anyway, then fine, I am wrong and we have to look at other options ( I have news for them, IF that is the case, if they think I will take the crap they gave every morning of my life, they got another think coming ) but at that point, I will look at other options.. 

But I do not think I am wrong and I am not going to shut up.. until and unless, they prove it to me.. I know my body, I know its history, I know how it works and moreover does not work. I have treated myself for years and have found ways that let me at least have something like a balance with the beast.. and damn them, they ARE going to listen if I have to scream ! 

getting off my soap box now

BB

Esta

Update to this: I lost over 25 lbs over this and they were appalled…. and FINALLY listened to me and a few bright ones in the group, who had not been in on the original request, flat out told the ones who did order this fiasco… that they were fools to have ordered such things for someone with IBS ( nice to know not all of them are nit wits ) and they agreed with me, that adhesion’s were likely the cause here, but… they don’t do surgery anymore to remove them, unless they are cutting off the gut. So all of this, was for nothing………..sigh

New medications, the trials and tribulations and FM


Goddess help me. I HATE trying new meds. I look at them with all the trepidation of a ticking bomb.  ENT give me no less than three of em. Now I have the good sense not to start all three at once.. the first one wasn’t so bad.. minor body rush for a few moments…. a wee bit of tired ( it’s supposed to be taken at night, so no harm there ) and it does seem to help a bit for what its for. Ok. so far so good, kept that up a few days.. same results.  Medication accepted.

So today I try med number two…… and ugh… Ever try those really rough OTC anit histamines ? The ones that make you shake like a tree in the wind ? The ones that just wipe your brain ?

This one is just like that times 3-4. and so far.. it has almost every so called “Minor” side effect the thing says it might have, and a few not ON the list to boot.. at this rate, I might even be allergic to it.. but not sure on that yet.. all I know is I feel crappy. Monitoring the reactions and will take whatever steps needed. But off hand I would say this one is a NOT !

It makes me doubly suspicious, to even look at number three that I have yet to try and what’s funny.. this one that I just did a while ago..was NOT the one my pharmacy had doubts about. Let’s just say it makes me real leery about the one he DID have doubts about to where I might not even try it… at all. And have him tell my doctor that nix on both the sprays.

And whats worse, Doctors, over all anyway, do not seem to understand this hesitance to try new stuff. They act like any side effects are just something to be endured.

Well news, when you have Fibromyalgia and a half a dozen other aliments, that already make you feel like crap.. you do not feel that adding further discomforts.. for perhaps little gain, is bloody worth it.

As the effects are additive. This one might cause headache, thanks.. I already have them quite enough as it is.. without courting more. This one says do not take pain meds with it.. it’s called HELLO.. your telling me I have to choose between a stuffy nose or be in pain for the day ? Pain that the medication itself… is causing ?

This one causes diarrhea….it’s called again, thanks a heap. I already have that problem and I do not need it aggravated. This one says will be worse with muscle relaxants.. which I take daily. Are you seeing the trend here ?  

Do Docs even read or understand the possible effects of the meds they hand out ? Or do they just see how it might help the one thing they are focused on ?

Whatever happened to holistic healing ? As in take all factors into account and deal with the entire person and the side effects to benefits ratio of all of your medications.. combined ?

I am willing to bet they don’t stop to think about that very much. But WE have to, as we are the ones taking everything, combined and their combined effects are what matter here.

Sigh.. hoping that perhaps this one won’t send me to ER AGAIN ! But am holding out judgement on that, until I feel normal again.

When will Health personal get it.. that you have to take all effects into account for the over all well being of the client ? 

Think a few good thoughts for me that these effects go away in a little while with nothing more to show for it, than a crappy day, which I have NO intention of repeating.

BB

Esta

 

Anyone have a brain to spare ? FMS


It seems that I am no more than dragging my body outta the black hole its been in for mts, and now my brain wants to stay on vacation. Trying desperately to complete some work I have been chipping away at, as I can, for way longer than it normally takes me ( the client has been very forgiving ) and I cannot seem to get my brain to work. I had thought, ok the body is getting back with the program since the weather is not so hideous, so lets knock it out and have done. right ? Wrong.

For the first time, in a long time, this is actually frustrating.  Now some of it, is my own fault, in that I let how tedious this particular job is.. make me find reasons to put it off, now I am facing a deadline, one that I set, as it must get done, and it’s like half the information.. you know the stuff ya thought ya had all lined up and ready to go.. isn’t. I am shocked at myself as this is not like me.. hell putting off work is not like me either but I managed to do it.. for longer than even I realized.

I am wondering if perhaps some of my new medications, are behind this and if so, how do I counter it ? As one must work, and I am at risk of losing my reputation here. I think its time to do some more research on the meds I started oh about 6 mts ago.. as if they are it.. then out they go.. I do not care how much good they are doing the body.. taking my mind for such details, is not acceptable..If its not them, then I need another plan here.

Getting off my soap box.. thanks for letting me rant

Well, finally got my medications. Medical frustrations and FMS


If you recall the meds I have been screaming about in prior posts .. well. finally, after literaly weeks of phone calls and personal harranges, I got them.

Now mind you, this was only after being so sharp with the staff, that one of them, hung up on me..  But she did do as she was told, which was trot her happy butt down to Medical records and demand some answers.

Seems they sent them off yesterday to my pharmacy. Now what is interesting about that, is the last information anyone was given by them, was .. send the faxes again .. no information from them to indicate they even had the the faxes ( twice over ) no one  even offered a guess at completion date, no notice in fact whatsoever, of what they were even doing or not doing about it.

As today, my ablity to tolerate this went through the floor and I was two cents over the line of even caring about being polite. As when I called on this for the umpteenth time, yet again the staff at my doctors office, were just reading off whats on the screen under my name in their office. Which of course, didnt say a dang thing about the medications, and has not, since the papers were first sent to them.

At no time has Medical records put in one word to the data base, or told anyone what they were up to and likely I am willing to bet, will not even record having sent them off for a week or more, as they seem to be as backward about data entry, as they are at handling the paperwork. Yet this data, is what my doctors staff, depends on.

Now, agreed, the staff should be able to depend on it, however, they cannot and NONE of them it seemed, were able to even understand the problem ! It is like, if it’s not in the computer, it doesn’t exist ?

I am suspicious that a good part of the problem, is due to the fact that most of the staff, has difficulty understanding English, and I do not mean that as an insult, I mean that literally.

As most of them, other than the Doctor herself, their accents are so thick, you can barely understand them when they speak. And it has been my personal experience that anyone who care barely speak the language, generally has trouble understanding it as well.

So what that has created is two fold, as the staff does know their jobs, however if presented with anything NOT on the screen, it seems they are lost, and furthermore, explain how you may, they just do NOT get it.

It was as plain as the nose on one’s face, that they just did not understand what I was saying to them and planned to do nothing about it but give me platitudes. Until I got downright rude about it !

This is not the first time that Medical records has done a major dance with paperwork of mine but it damn well had better be the last, or someone’s head, is gonna roll, as I have had it with them. Not just for myself alone, but for others as well. 

As it happens, the medications that needed some extra steps on their part, where not critical, in  that yes I could do without them for a few weeks. But what if I could not ? What if I were as my mate is and I was a Diabetic ? Or I had heart problems and NEEDED the medications, just to stay alive ?

As I firmly believe that it would make no difference to the paper pushers, at all. Anymore than they did for the paperwork for my bath chair and walking aid, the lack of either of which could have caused me great bodily harm if not death. They did not care.

I was at least, able to assure my pharmacist today as I have throughout all of this , that he was doing HIS job very well, as the man bent over backward to try and get this issue resolved for me.

He was very appreciative of the fact that I gave him a heads up, kept him in the loop at all times and that I assured him. that it was by no means his fault and I thanked him very much for his extraordinary efforts on my behalf. But he should not have had to make them.

Well, enough is enough, as I will find out who is in charge over Medical records ( as talking to them.. is pointless ) So far, no one wants to say who is really in charge of it, but I know where to find out. I plan to file formal complaints and if possible, charges against them for their negligence.

And no, I do not care at this point, if someone loses their job over it, in my view, given how poorly they are doing it, they should be booted right out the door, as they risk other peoples lives here and that cannot be condoned. If no one else will raise enough fuss to see it changed… I will !

Off to plan someone’s ultimate nightmare…

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

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