Tag Archive | healthcare

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

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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

 

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

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

Feeling half way human and running on empty. FMS


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

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

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

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

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

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

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

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

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

Welcome to my world 🙂

BB

Esta

At War with my HMO.. again !


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

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

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

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

Ready to flat pull out my hair here !!!

BB

Esta