Archive | May 2011

Stonewalled by Medical care and FMS

Well, I finally found out what the problem was with all the Chiropractics listed in my healthcare book and have basically set the dogs on em. They are all under contract to my health care plan, but are reneging on the deal they made with the Health care company.

So no, I am not crazy, they are under agreement with my health care provider, yet are trying to force anyone who wants to see them, to shift over to their MD, which is not the deal they made.

So heads are gonna roll, and she ( the specialist who deals with such things ) will, if needed find me a totally new Chiropractor in the local area, who she can talk into joining the health plan if she has to, and most of the ones on the list now, just might find they get no more business from my HMO.

Just goes to show, it pays to complain sometimes 🙂 And hopefully it will mean that the next person who needs such a doctor, will not have to run into being stonewalled, as I have been, so a win-win for everybody ( except perhaps the doctors currently on the list, but that is their problem, as they created that situation for themselves )

Anyway, so have been on the phone all day thus far, I did manage at least to finally get an appointment with the Vein specialist that was ordered over 6 mts ago but never followed up on, so at least one thing nailed down for the day.

Tomorrow I get to run the same issue with the GI people and hope, they do not tell me something like, an appointment, 2 mts from now. As I plan to be a total pain in the butt about it, and do some strong arming of my own if needed. It does not pay to be passive when it comes to healthcare and social systems. The tests I just went through, well prove that things need to be done and I plan to harp as much as needed, to see them done.

More soon…



Frustrations and FMS

The Gremlin is back. Woke up feeling like a truck ran over me in the night. But, I did get some sleep, so chalk up one for that at least. 🙂

Today is kind of a special day, in that it’s the anniversary of when my mate and I met in person for the first time and it’s killing me that I do not feel up to doing anything special, to mark the occasion this year. Now the blessing is, he will understand that ( not to mention he isn’t doing so hot himself lately ) but that I have to make such choices, due to my body, is just frustrating. I mean is going out to dinner, so much to ask of my body ? Today, it is.

But such is our lives, what we plan or even want to do, FM is deaf as a post to any of our requests. Sometimes, I think it’s the most frustrating thing about the crud. You learn to deal with the pain, the problems, the issues, but dealing with the axe it takes to your life, can be hard.

I feel like I am two people sometimes, the person I was, and the one I am now. Now inside, nothing has really changed, outside however, is another matter, entirely. It is kinda like the old joke ” inside every fat person, is a skinny one, screaming to get out” that’s me. Only it’s the healthy person I was, that is banging on the door saying, let me out. And I dearly wish, that I could.

But it does little good to do comparisons, I am what I am now.. and that is the reality of my world and all the wishing I could muster, is not going to change that. So, we ” put on our big girl painties” and just deal, it’s not like we have a choice.  So Happy Memorial day and blessings on our soldiers who we honor this day.

More soon…



Pacing and Energy use in FMS

Another Landry day, ugh… but it’s one of those things on the list of “gotta do”. Please see my FM site, for ways to make this task, less of a pain, literally. But it means you are out on a hot day, in a hot place, exerting yourself, when you are done doing all that, you are wiped out.

This is the cost of doing almost any task when you have FM. This is a fact, we with FM, just learn to live with. And it varies from day to day. Some days, the cost is even higher. If I am lucky, I will be able to cool down, re hydrate, and recover enough to get the clothes put away, and that will be about all I am good for, for the day, and I count this a good day, in that I could do it, at all.

I would have just gone and gotten some take out for dinner, but again.. thanks to Fibro fog.. I forgot about it, so it means, I  have to cook too. But I have a few hours to recover, before I tackle that.

Pacing, is so important for us, as anything we do, requires recovery time. We are at the “lactic threshold” almost all of the time. Which in English, means our muscles are two cents off of total collapse, just from being awake and sitting here. So really doing anything, we push the muscles into exhaustion, in very short order. As I said before just doing normal household tasks, is equal to pumping iron for the same amount of time.

Well, off to put the clothes up, before they get cool and wrinkled, then will sit here for another few hours, before I attempt doing dinner.. welcome to my world.

More soon…



Tired of being a vampire and FMS

Well, another dreadful night of up till dawn, I swear some days, I feel like a vampire ! Now, if I had their healing ability, that would not be such a bad thing, but I don’t and it sucks ! No pun intended  🙂

I am still holding off on the new meds the doctor gave me for sleep, as I want this secondary infection to go away, first. I finished the last of the antibiotics, yesterday and the ear still feels weird. Like it’s stuffed full of cotton, but it at least doesn’t hurt. The drug is supposed to keep working for some 6 to 10 days, after you stop taking them, so we will see. I want to at least have the majority of it out of my system, before I try the new ones. 

A word to the wise, if your doctor gives you more than one new medication, try them one at a time, as if you have side effects and you have taken more than one, you will not know which one of them.. is to blame.

I still have my doubts on the  antidepressant, for sleep. The Gods know how many of them, I have tried for that. As overall, they tend to make problems we already have, worse and  for most, don’t even work, at least I have not seen one yet that will work for more than a short period of time.

But I am willing to give the new one a go, but unless it majorly helps, and does not make everything a lot worse, it will go in the bottom drawer, which is where I keep all the stuff, that didn’t make the cut of being useful. 

I wait until I have a sack full of them, then take them to pharmacy, for proper disposal. Our water system has so many drugs in it, from how many we have flushed down the commode,  they can literally measure it, so always take any unused drugs back to the pharmacy, and let them dispose of them. And unfortunately, for those of us with FM, that drawer almost always has some failure, in it.

More soon….



Medical care and red tape !

The red tape and hoops they make you go though, to get medical care is just insane ! I HAD an appointment with a doctor today, that according to the handbook I was given, I do not reed a referral to go see. Only to find out that yeah, I do.

Or worse, that I am supposed to change them to my Primary care doctor, which is even more insane ( given that the one I want to see, is a Chiropractor who could not BE my PCP ) And since it is again, Friday, I cannot do a thing about it, until Monday.

This is particularly irritating, as I just saw my PCP, a few days ago and could have gotten the referral from her, if  I had known that I needed one. She would have been more than happy to give it to me, as she agreed with the need to see the specialist, and get this.. even SHE did not know that a referral was needed.

Now, I consider myself an educated person, especially when it comes to medical care ( with FM you kinda have to be ) but Medicaid/Medicare, has got to be the most complex system, I have ever seen, as most of the write ups in their so called handbook, are incomplete and often, contradictory.

You almost have to be a doctor, or worse, a lawyer, to understand the things. And half the stuff that you need to know, is not in it, and you have to call them, to find out. Just bonkers, the bloody lot of it, to make a person wait and go through all this red tape, just to get an appointment … that they will pay for.

Health care should not be this complicated !  Going off to grump for a while, and re-read the damn manual, and tear their website apart again, and see if I can figure out, what I missed.

More soon



Letting the Dragon that is FMS, sleep

I was able to get up, before the alarm went off today.. yeah ! Now I know it seems a silly thing to be happy about, but it is one of those rare events. The storm blew itself out to sea, and it’s a bright sunshiny day out there, which is slated for the entire week. So here is hoping the flare settles out.

I manged to get some work done today, and was going to go shopping too, but I figured naw, why push it. Starting to feel half way human, and I do NOT want to walk over to the Dragon that is FM, while it’s just starting to doze off and kick it and wake it up. It is not wise 🙂

Letting the Dragon, sleep, a thought near and dear to my heart, I have a whole page on it, on my FM site, but what it basically means is, finding a balance point with FM. To find a level of activity and medications, that lets the beast at least doze, and no one in their right mind, is gonna walk over and whack it one, by overdoing it, if they can help it.

Now, this stance is good for us, even if it is real tough to learn how to do for what are generally type A personalities, which is most people with FM, but it is stance on life that is very hard to understand, for other people.

On days like this, when you say, no, not doing X ( fill in the blank) as you have reached a point of, not entirely miserable, and if you happen to say that out-loud, you often get.. the look.

Now the look can be for a variety of reasons, but most often it is due to the fact, that you seem, perfectly normal, and in fact, you seem to be doing pretty good for the day, so they often cannot understand why you do not just get up and hustle.

Now, when you have been in a major flare for days, ( weeks etc) tempting that to return, is just not something a sane person, is going to do. And hopping up and running off like the energizer bunny is almost a sure bet of going right back into the flare, that you are just now coming out of.

But dang is this hard to say, even to yourself. You cannot help but think, ” but I have things to do !”  as your to do list, stares you in the face. But you have to come to the realization, it’s either walk softly, or FM will be the one with the big stick and it will not hesitate to whack you all over your body, if you tempt it.

Now, I have to go out tomorrow anyway, to a doctors appointment, which will likely be a “sit down and have tea” talk, before we get into anything major, so tomorrow is soon enough for the shopping ( besides, it saves gas and given todays prices, thats a real consideration ) So today, I will let the Dragon sleep and hope, I dont wake him up, tomorrow.

More soon…



Medicaid/Medicare and FMS

I was finally able to find a Chiropractor, and that took two hours, as most of them that were  listed by my health plan, do not take Medicaid. Now, why most of the doctors were even listed in the health care directory, whose clients are almost all on SSI, is beyond any understanding.

Now, if I went outside of my health care plan, I could likely find more, but I question the rational of even bothering to have them in the book, a book made for people on SSI and therefore on Medicaid or Medicare, if they do NOT take the insurance ?

I was starting to wonder if I would be able to find one, that would even take Medicaid. Out of a grand total of 6 listed for the speciality I needed, I found one. ONE, think about that.

To make matters worse, the current health care changes, will equal cuts to what said doctors are paid, and this will mean even fewer doctors, who will take on Medicaid/Medicare clients. Not that I can really blame them, but I can see a time happening, where you are going to have to hunt under every rock and go way out of your way, to find a doctor, that takes either one.

Recall, who is on Medicare/Medicaid … Elders, children with disabilities, and people like me, who are not aged, but disabled. All persons who have little income, or means of long range transportation, who are going to having to go far from their homes, just to see a doctor.

On the upscale, the antibiotics seem to be working, as the ear doesn’t feel quite like someone boxed me upside the head anymore, just a little deaf still on that side. So good news on that front. Still in a major flare though, but I do not expect that will go away, until the infection does and the weather settles down. And we are going into hurricane season.. yeah !! NOT !

More soon..



To be grateful for the little things, is a gift. FMS

Being grateful for the little things, is one of the few gifts that FM brings us. How many of us, when healthy, just take our energy and ability to accomplish things, for granted ? If having FM has done nothing else for me, it has made me realize, just how precious the ability to do anything, really is.

 FM for me, is only one, in a long list of bodily insults. I have lived with some kind of limitation or other, most of my life. I was diagnosed with arthritis for the first time, at age 16.  I had a knee blow out, at age 23, ovarian cysts, that created years of pain and debility, until a total hysterectomy at age 25. Then of course, the joys of menopause.

And so very much more but I think you get the idea, and I had learned to live with each new challenge and over all, manged to overcome, or learn to adapt to them, then FMS struck. Needless to say, while I have learned adaptations to this new insult, there is, at least not yet, no way to overcome it.

Now, I tell you all of this, not to invoke pity, but to make a point. That all of these things, can make one honestly appreciate, the days when things work, when you have energy to do most of the things you had planned, when just the simple act of reaching for something, that today, didn’t create extra pain, is something to be savored, for the gift that it is.

It is said, we never fully appreciate, the absence of pain, until something like FM hits and we never know a day, without it … again. So we savor the little things, the small victories, in a way that the healthy, can never really understand.

More soon…



Rationing out energy and pacing yourself FMS

Pacing yourself, is a major deal when you have FM. Just to give you an example, let me tell you about my day. I am more than a bit wiped out right now, for what I consider, a productive day. I got all the calls I could make, done.

My Doctor has a approved a re-visit to the GI clinic and I am going to have to strong arm them, into doing something about the GI issues. The household aids I asked for, is being handled, and other appointments I can make to deal with other issues have been approved, I have a list lined up for tomorrow, plus I got some shopping done and my medications picked up. This for me, is a busy day.

Now notice, we are talking two stops with the car, shoving around a heavy cart, and half a dozen phone calls, and I am sitting here, so tired I could likely nap, if I lay down. My day started, 3 hours ago, and I have just about used up my store of energy for the day. Unless I can recover a bit, we will see.

This is normal, if you have FM. One burst of on the go, is about all your good for, on any given day. Now, I could keep pushing myself, however that just courts the infamous Push-Crash cycle, that we with FM, are so familiar with. Where you extend beyond your energy ratio for the day and Crash and burn, into a flare and wind up spending days or weeks, in misery. So if you are wise, you learn to pace yourself.

To many people, this pacing is unacceptable, it means to many, that we are lazy, unmotivated, or just plain malingering. I know as have been told all of these things, to my face, by laymen and professionals, alike.

To them, to limit myself means, I have “given up” and ” let the FM win”. News, it is not a game, or at least, not one you can win if you wanna look at it that way, as FM holds all the cards here, you either play the game by its rules, or you pay for it, dearly.

A wonderful way to explain this concept was given to me by a fellow FMer, a lady who has Lupus, started the movement, called spoons. She was looking for a way to explain to her best friend, what a day living with a chronic disease, means.

She gathered up all the spoons in reach  in the restaurant she was sitting at, and told her friend that each one represented energy one needed to DO anything. She gave all these spoons to her friend, and then took one away, for everything that would cost her energy. Her friend finally began to understand, what it meant to ration out what energy you have. Please read the full story.. here

More soon…



The need for family and social/medical support in Fibromyalgia

Last night, I just could not take sitting here at the computer, even though I have things I need to do, so I piled up on the sofa early, to watch TV. When I got up to get a drink, I found my mate had done the dishes. He has no idea how much that means to me. Support on the bad days, matters so much, and I thank all the Gods, that he “gets it”

I have lost two mates due to this curd, as they didn’t “get it”  one almost directly after being diagnosed with it. I was in shock, I was depressed, and in an almost constant flare, and he just could not deal with all the changes. We talked about me quitting work for my healths sake, and yet, when I did, everything changed. 

In short order, since I was no longer making money, I was shut out of financial decisions, then came the complaints of household work not done, etc etc. I think you can see the picture for yourself. It ended in divorce. ( statical note: over 75% of unions, dissolve when major illness or injury, enters the picture )

In short, my life, as I knew it, had just taken a major dive, no differently than if I had gotten run over by a bus and broken half my body, yet since there was no “accident” there was little to no consideration, from anyone. For any life changing illness, we go through the same stages as we do for grief, they are:

Shock stage: This is the initial paralysis, we are reeling here, as our life as we knew it, just changed.

Denial stage: Trying to deny it’s real

Anger stage: Frustrated, lashing out and generally enraged.

Bargaining stage: Almost desperation, as we try this or that medication, or procedure, with an idea in mind, if we do X we can cure this and it will go away.

Depression stage: When we finally realize, it is real, it’s not going away.

Testing stage: At this point, if we are lucky, we are looking for more realistic solutions.

Acceptance stage: The point were we look forward and move onward.

It took me over a year, to reach the testing stage, and I almost dropped myself into a full blown depression in the process, as not only was I getting little consideration from my mate, I was not getting a lot of help from my doctors either. As when I was diagnosed, FM was the ” its all in your head” send them to a shrink idea, in the minds of most doctors.

In fact, the doctor I had, at the time I got my diagnosis, the same one who had been treating me for all the various ailments, ones even he considered legitimate and provable, gave me pain killers etc. for over two years, dropped me like a hot rock when the RA doctor he sent me to, sent back a diagnosis of Fibromyaligia.

All support from him, stopped, all medications, everything. (  in fact he told me to go see  psychiatrist … just as an FYI, I got him fired from the university I was attending at the time for such treatment, but those who took his place, as soon as they read FM on the chart, were not much better as far as support ) I was entirely abandoned, by both family and the medical society.

For many years after that, I learned the hard way, how to manage it, as best I could, with often no help whatsoever. Now some signs, like IBS, that those around me then, could at least see, were given some consideration, in fact it was considered the worst issue I had, as its effects, are visible. But the rest ? No, no one really got it.

Now, thankfully, some 15 years later, most, mind I say most of that, has changed. My current doctor “gets it” and is trying, within the limits of the medical care system, to help. And, she is very understanding of my frustrations.

I finally got SSI, after over 10 years and three states of trying, as again, in the public mind FM is finally getting some recognition and a little respect from at least part of the system. But I honestly believe, that if I did not have a whole host of other issues, strokes, body-wide joint problems, spinal stenosis, bone density issues etc, that are provable at my age now. I still would not have gotten it, for FM alone.

The long story short here is, do NOT let those with FM, that you love, fight that fight, alone. As the problem is real, the issues are real, and to make them have to fight that fight all alone is courting literal insanity and yes.. even death.

Something to keep in mind, Chronic pain is at the root of 70% of all suicides. The national average is 2.9% of the population, for those of us with FM the average is 10 times that, at 29.9. So consider well, before you leave your loved one with FM, out in the cold, as you may well be condemning them, to death

More soon….