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

 

Traveling and FMS

Well all, I have good news and bad news, the good news I am going on a trip and the bad news is.. I am going on a trip Anyone with FM knows a trip to go shopping can wipe you out,  a trip over several states ?

Well, lets just say I am very looking forward to seeing family but I also know, that the trip itself, is gonna be a major pain, literally and otherwise. Not only for the coming and going, but being in an environment you do not control and all the “prep” work needed before hand, is a must

So I figured this was a good time to post my tips for travel, for everybody.

Get organized: MAKE LISTS

This means the house you are leaving, as well as organize, as far in advance as possible all the little things you need to take with you. Which of course, includes every medication you have, even ones you do not take all the time and do not forget all the OCT ones and Vit/herbs we use. Take your HC tags.

Re fill your scripts if possible before you go, so you are not having to deal with the problems of unknown pharmaceutics and the like.

Pack comfort clothes, especially your “travel” get up.

Know the weather where you are going and pack for that

Pack as light as possible, let things do double duty, you do not want to take everything with you, as there will be times.. YOU have to carry it.

Getting to your destination. Depending on how you travel, you can do many things to help yourself here, since I am flying.. I will do those.

To start off, once you check bags and get your boarding pass,  ( have your Id and any conformation numbers printed out at home and have both in hand before you go to the desk ) Then, pride be hanged, command a wheelchair and a sky cap to push you around, the second you get done with that. One simple reason, most modern Airports, are huge.

In any of ours here in Houston, I know full well that to walk to the gate area, toting bags, would be a good half hours walk min. However, most often they will wheel you to one of their little golf cart things and take you where you need to go. And park you right back in a chair when you get to the gate.

There will be the normal baggage and body check, plan for that. Have all your medications IN their normal bottles. I know, it might look like your a walking pharmacy to do that but it saves a lot of time and questions.

Likewise know the rules for the plane you are going to fly, one, what you can and cannot take with you. By and large any large bottles of any liquid are a not, they will just make you toss them, so don’t waste them by bringing them. If you must bring any, put small amounts in approved bottles and take those.

Getting on the plane.. if you are in said chair.. you will be the first to board, and the last ones off, so in either case, you do not have to put up with a press of people and let the personal help you get that bag both IN and from the overhead. If need be, if the flight is long, and your legs have gone on strike, have them literally carry you off the plane, if there are stairs to navigate, which in the smaller airports, there will be.

Take any pain killers you have, the moment you arrive at the airport, even if you do not hurt that much.. yet.. as trust me. you will, so get a head start on it, so it never gets out of hand.

Ear plugs are a must have, as the babble of noise in the airport is bad enough, much less the pressure and roar of the plane. You will be almost overwhelmed with sight, sound, smells, the overload can be considerable. So wear shades, use ear plugs or your MP3 player anything to dim the mass of data you have coming at you. Nasal sprays are a good idea, as the air inside planes is notably dry, likewise eye drops.

When you arrive, do the reverse, and let them take you to baggage claim etc.

Now once at where you are going, do NOT just launch into whatever you went there, for. You are going to need some recovery time, plan for that and expect it. Heck, go take a nap if possible.

Once semi recovered, realize that be it hotel or family home, nothing is gonna be where you need it or expect it. As recall, in your own environment, you control everything, in this new situation your control is more limited and this will cost you energy points. Again, expect it and plan for it. If we have aids like walkers, bath chairs etc, we cannot, generally speaking, take them with us.. so  other plans, will have to be thought out.. in advance.

Going home is the reverse, with a bit of planning and care, a trip does not have to be a total nightmare Wishing you and yours a happy and Pain free holiday

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

Weather changes and FMS

Hello all, sorry its been a while, mainly due to the topic at hand, which is.. weather shifts and how it effects those of us with FM.  This summer it was due to unseasonable heat, triple digits almost everyday.. Now, with almost no warning or slow decline, we have gone into sometimes rather bitter cold. All of this has taken place in a matter of weeks, often jumping from needing the AC one day to cranking up the heater the next.

Now, why is this an issue if you have FM ? Several things, not the least of which is that most of us have other joint issues, which very often, came first.

“The main symptom is chronic pain, causing loss of mobility and often stiffness. “Pain” is generally described as a sharp ache, or a burning sensation in the associated muscles and tendons. OA can cause a crackling noise (called “crepitus”) when the affected joint is moved or touched, and patients may experience muscle spasm and contractions in the tendons. Occasionally, the joints may also be filled with fluid. Humid weather increases the pain in many patients.”

Now, given that FM is a pain amplification problem, you can see where this is heading. You already have body wide pain, which the FM grabs and cranks up the volume. Anyone who has OA knows, that we are better predictors of a weather shift, than most weathermen. And a sudden shift, can about drop you to your knees in pain.

Now, I have had OA since I was a girl, so you can about guess, what it means for me.. now at well past 50. Then to top it off, my IBS decided to break the bonds of control and go entirely nuts on me for about three weeks.. again, almost a direct relation to the sudden weather change.  I am still unsure as to the why on that one, but I have a guess

Neurotransmitters:

“A major development in the study of IBS and other gastrointestinal diseases in recent years has been the growing knowledge of the importance of the nervous system in the gut. The intestines are now known to have the highest concentration of nerve cells in the body, besides the brain. There is constant back and forth communication between the brain and gut, particularly through nerve cells using serotonin, a neurotransmitter that is also very important in the brain in the regulation of mood, (sleep and pain regulation). “

Now, since it is also a given in all this, that my sleep patterns, such as they are, went entirely insane as well, likely due to the sudden shifts of light and dark we have been having and said nerve cells that need serotonin to “talk” to the brain, have been going begging. Therefore, while it was a surprise, as its never happened before, it is not really that strange.

Not to mention, we are, as a group, very senstive to cold and light , especially when either one makes a sudden change.

In short, we do not do well, with any sudden changes, no matter what the cause, even if it is Mother Nature. Hoping for better days soon

More soon

BB

Esta

 

Medical records might finally, get theirs ! Frustrations and FMS

For those of you who have been following the saga of my teeth grinding  frustration with my clinics medical records dept. over the past few mts.  Well, they are about to get theirs !

I had every intention of hunting down whoever was in charge of these people, on my last visit a few days ago, as yet again, one of my scipts was held up for over two weeks and at that time I was standing there, had yet to be approved. Two things intervened, with me having to do much of anything directly.

My Doctor was hopping mad over it for one, and it was the first thing she tackled when I walked in the room, by side stepping medical records entirely with a new script, with back door backups she set up herself with the local pharmacy, attached to the clinic, if for any reason Medicaid, refused to pay for it, she would see to it, I got it for free. As the medication in question.. she does NOT want me off of, ever

So they are gonna get an ear full from her.

And two, by the hand of Fate or as I personally believe, the Gods providence, who should happen to be working in an office in my doctors section, but the social worker, she whom I had had every intent to hunt up. And there she was, right handy.

All I had to do was ask her, as she hurried by, when you get a min. I need to talk to you. As I was waiting for my Doctor, she made the time. After I told her what was up, ( this not being the first time I had brought the issue up with her ) she was just as livid as my Doctor later turned out to be, and SHE knows who is head of that department, personally.

Come to find out three things were happening. One, there are only two workers  in medical records, two, that the “good one” and I quote, is always being shifted off to other clinics. I assume leaving the one who really don’t give a damn, behind and three, they are quite unaccustomed  to even having to deal with outside pharmacy scripts, being faxed to them, at all.

Therefore one assumes, they were handling the prescriptions, in the same way they handle what is most of the paperwork they deal with, things that over all, are not time sensitive, which is to rack it in the to do box and deal with it, whenever they get to it.

Now, if I had not been calling and having my doctors nurses go over to medical to harrass and complain to them, or had not spent hours on the phone with them, after my medical supply house, had it up to here with them. Or if I had not had one of them, I assume the one who gets left behind, complain to me basically about having to DO her job at all,  I might be inclined to cut them a bit of slack for something that is, in fact, outside of their normal tasks.

However, I am NOT so inclined. And it seems, my Doctor and the social worker, agree with me that the very idea is insanity, that I had to wait, and call and send people over there and that my pharmacy was having to send and re send the paperwork over and over, for weeks was just plain out of the question. Let us just say, they were no more impressed with the whole affair, than I am.

So, hopefully, this will see an end to this tale, as I firmly believe, given the peoples ire that I just quite literally sicced on them, that any repeat of this offence, will be dealt with, harshly. and I cannot say I pity them over that either.

My thought is this, while in my case, it was mainly a bother and frustration having to fight with them for mts, but what if, as I have said before, that the scripts coming in to them, were for something critical ?

Like heart medications, for Diabetes, high blood pressure meds,  ( thinking of just my husband here as example ) Any one of which, having to do without for weeks, would be risking major damage or even…. death.

So pity them ? I think not

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…

Ready to hang the entire medical records department

Well, I just found out late friday, why my medications are being so screwed up. It seems the fax my pharmacy has to send.. has to go through the medical records dept. before my doctor, ever even sees it. You know, the same people who screwed up one lousy peice of paper for 2 mts !

Gurrrr…  I mean, it’s not their fault that medicaid up and decided that those three needed pre authorization, but.. big but here… out of three, there is only one completed. One was sent prior as in over two weeks ago… the one filled was sent with another one at the same time.. it’s been filled.., and yet NO ONE seems to know, what happened to the other two. And they were faxed, twice ! Once at their request.

I plan to make just one more phone call tomorrow, and if I do not get a decent answer, since I have to be in the area anyway … the medical records people will be seeing me.. personally ! And I dare say, they are not gonna like the visit, as I will see to that.. personally !!!

BB

Esta

 

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