Tag Archive | Health

FM and Exercise, facts and fallacies. Why the wrong way, does more harm than good

We with FM are told, repeatedly and without fail, that we need to exercise. Nor would any reasonable person disagree that moderate fitness requires a certain amount of exercise, for over all health. However … what is most often not said is the proper way to go about that. As the wrong kind of exercise is not only not helpful, it can be downright damaging.

The work hardening and strength training programs that are commonly recommended, can literally cripple a person with FM. Allow me to explain why …

Most of us have, CMP  (on site link), which creates Trigger points or Trps, on the muscles themselves. Not only are they in pain, they are also compromised and weak. You literally cannot strengthen a muscle with Trps. Any attempt to do so, in the incorrect fashion, can permanently damage the muscles themselves, unless the CMP itself is treated correctly. If this is not done what you have is..

“… muscle is already contracted and tight. Strengthening exercises and repetition exercises will worsen the TrP, and may cause the development of satellite and secondary TrPs. Some of the latter patients did not have full-blown CMP when they started the inappropriate therapies, but were disabled by the time they finished or dropped out of the training. “The Facts, on site. So treatment, if you can find a doctor who knows how, of any TrP’s is a must.

Even if lacking in treatment, just being aware that they are there and acting accordingly with regard to exercise types, can be helpful.

So, we have on one hand, doctors recommending exercise, yet on the other hand, a largely unrecognized issue of exactly how this should be accomplished

OK, why do doctors recommend it ?

Fairly simple, in persons with a normal functional system, exercise … even of the cardiovascular type, is directly beneficial. 

What occurs in a normal person due to exercise of the cardiovascular type:

Increase in temperature
Increase in cortisol production
Increase in growth hormone production
Increase in catecholamines (norepinephrine and epinephrine)
Increase in cerebral blood flow
Improved mood
Lessened perception of pain
Improved sleep

What happens in a person with FM doing the same cardiovascular type:

Decrease in temperature
Decrease in cortisol production
Decrease in growth hormone production
Decrease in catecholamines (norepinephrine and epinephrine)
Decrease in cerebral blood flow
Decline of mood
Heightened perception of pain
Disruption of sleep

In short, you get the exact opposite of what one would expect to find and furthermore, even those who are able to improve basic over all aerobic fitness,doing the typically recommenced exercises, find no improvement in their FM.

“No association was noted between improvement in aerobic fitness, as measured by VT, and the improvement of pain, function, or scores … aerobic exercise is beneficial to patients with FM overall, but the possible cardiorespiratory fitness gain is not related to any notable improvement of FM symptoms.”

Other recommendations:

It is common to suggest stretching  and flexibility exercises, but here again some factors need to be take into account. Over 81% of persons with FM, have what is called, Joint Hypermobility ( Joint and tendon issues, on site  ) For example, during stretching exercise, it is common for those of us with FM to over extend and therefore injure the joint. This is possibly due to hyper flexibility. The overlap of these two conditions is so high, they are treated almost identically.

So, what should we be doing ? 

Any movement, is exercise. Understand, that if you have been sedentary, even just walking across the room, is exercise. Rotating your arms, shoulders, feet etc., while seated, is exercise. In short, any move you do on purpose, can be exercise. 

It is not about special clothes, or weight sets, or going to the gym. It’s about moving the body in a controlled fashion. The more you can soothe the tension in the muscles and joints, by and large, the less they will hurt. Simply because they are not tensed up and clenched. Soothing them out also allows them to have greater blood flow and fluids, so they can heal themselves better of the damage that is done to them, by being constantly clenched in pain. 

Water exercise:

And no I don’t just mean in a hot tub or heated pool ( but if there is one handy, all the better ) I mean in the bathtub in your house, slow moves in the shower. Working out just hands or feet, in a bucket of warm water, if that is as close as you can get. 

( The recommended temperature is at least 91 degrees or higher. It is not recommended you try such a work out in cold water, as the cold makes the muscles and joints, tense up, which is counter productive to what you intend. Swimming is good exercise, but it is not the kind of pain reducing exercise we need, unless it’s in a heated pool )

Ok, now, why in water ? Simple, the water is warm, which loosens the tension in the muscles and joints for one and for two, buoyancy. The normal human body floats in water, so a lot of the weight is supported all the way around. And more, even simple, easy movements, with water as resistance, is more exercise than in the air. 

Just to get in the pool and walk, just walk, will work out muscles all over your body. When I had access to a hot tub by the pool at my apartment complex, I was in much much better shape, as I was in it almost daily. 

But even small movements, while in an ordinary tub is of good benefit, with a lot less of the strain and pain we often experience. The water helps prevent the hyper extension, due to the waters resistance, so it’s very difficult, unless you are really pushing it hard to over extend the joints and do them injury. 

Keep your water work outs short. You are using a lot more energy than you realize in the water and can wear yourself out in short order. So pay attention to your fatigue levels.

Tai chi:

This form of exercise is the ultimate in low impact, for the simple reason it is all about sifting your own body weight and slow full range of movement. Done properly, Tai chi causes no impact strain. As well as, it can be done in a minimum of space and can be done, by just about anybody. There are lots and lots of videos and books out there on it and I highly recommend you find a few and read them. 

This form can keep you flexible and reduce muscle and joint tension. The low, slow compression, is also a perfect means to feed the joints and cartilage between the bones and joints. 

Cartilage feeds by compression. If the joint is not moved, there is no compression, so it does not get fresh fluid flow and like any joint, no lubricate means, it’s stiff. Neglect this for long enough and the cartilage can literally dry out and die. The slow moves of Tai chi, do the compression gently, with lots of time for the fluid to flow in and out of the joint.

If you are not up to doing it standing up, then do so sitting down, moving just your arms, shoulders, rib cage, neck etc. and work your way up to where you can get the rest of the body, into the game. If you can only do so, for a few moments, fine. Do that few minutes, for as long as needed, until you can work your way up to longer time frames  Your body did not get into the shape it’s in, in a day and it will take time to work its way back out of its current state. Make haste, slowly, or you will undo all the good you might obtain.

Problems with most exercise routines:

The problem, with most “exercise” routines  is: One, they are often the wrong kind, which cause more pain, for no gain. Two: They tend to be too much, and too often. We are not your average person, our bodies are not average, so there is no reason to expect YOUR exercise routine to be the same as your average non FMer.

Realize, this is the goal most often set by doctors and even most therapists. They are used to working with people who have otherwise healthy muscles, who have had an injury they are trying to recover from. Most simply cannot accept, that by and large WE do not respond the same way to most exercise, as other people.

Most of them are not geared to dealing with anyone who has the kind of limitations we have, so honestly, your best bet, is to go it alone, at your own pace and your own time frame. Rest when you need to. Remember the idea of push crash ( on site ) the object is to improve your flexibility and reduce pain, not increase it by working yourself into a flare. Give yourself extra rest time after your work outs, you have expended energy and you need to recoup that.

Will this cure FM ?

Lots of argument on that but over all, the answer is … NO. Will it help ? Yes, for the simple reason of “use it or lose it”, if you do not use a muscle or joint, it atrophies and if that goes on long enough, you can damage it to the point where it cannot recover. 

Is it a challenge ? You bet .. Will it hurt ? Very likely it will increase pain … for a while. But done right, slowly, without strain and stress, you can improve the over all functionality of the body and reduce an already high body stress level. 

Do not expect your FM will go away for doing this. Anyone who tells you that is .. lets be nice .. mis-informed ! I will forgo what I would rather say 🙂 But, can you reduce some of the body stress and therefore the pain with the right kind of exercise ? Yes, it’s been proven you can, but ONLY if it’s the right kind and done the right way. Anything else …  and you can do damage you might not be able to undo… so go slowly, listen to your body … pay attention to the signals it’s giving you. YOU and only you can listen to the things your body is saying and know what works for you.

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



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

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…

Avoiding FM flares

Hello all, sorry I have not posted recently. I have not fallen off the face of the planet 🙂 But have been busy and fighting off an FM flare, all at the same time. I say fighting one, as most of you with FM know, that you can feel it coming on and you do your best to stave it off.

What I call, letting the dragon sleep. It’s like we all have this huge sleeping dragon, with anger management issues, curled up somewhere,  that we hope, stays dozing away. Since no one in their right mind would walk over and kick it awake, as it’s a foul tempered beast and the first thing it would do, is take a few bites outta us, and walk all over us in the process.

So it begs the question of ” how do we stave off a flare ?”  These things and many more…..

Take the time to rest: Means just what it says, just do it and never mind the voice in the back of your head trying to tell you otherwise.

Don’t wait till the crash before you do something: As in do not wait until the last moment, before you take preventive steps.

Postpone or get rid of unneeded tasks: Just what it says, if something does NOT need your direct participation, then don’t do it.

Delegate: Again, just as it says, hand things off and  go do what you need to do, in order to avoid forced down time.

Plan things: This one might be obvious but there is nothing more energy wasting than a poorly thought out activity, no matter what it is, so get your act together here and your body will thank you.

Know the things that make you crash: We all have our personal “triggers” if you will. A great many we share in common but some, some are very one of a kind to us alone. Figure out what they are for you, and avoid them.

Acceptance: Face some facts, flares are going to happen, it’s a given, so beating yourself up for having one, is not only pointless, its a recipe for making the flare… worse, not to mention, stay longer. So do not do this to yourself.

Leave some flex room: Life doesn’t have script. If at the last moment we need to change things, based on how we feel right now.. then do it, change it. Do not just keep right on, with whatever it was, if you are not up for it, as you will pay the price, in pain.

Ditch the stress: I think this one is pretty self explanatory 🙂

Learn when to say No: Tough one for most of us, as we tend to feel guilty if we say no. But let’s again face some facts, we do not have the fund of energy we once had, period.

So we have to ration what we do have, and that often means, saying no, to a great many things. If in doubt as to what you think should be on the NO list, refer to Postpone or get rid of unneeded tasks:

Now, on my site ( see side bar for link ) you will find a more detailed, and less personal description as to what these all mean, as well as many others, but in basic.. this is how it works, this is how you work around the flare, on tip toe if need be, which is where I have been for a while. Which meant that this, my blog was one of the things that had to go on the list of…. later.

But I hope now that it is back, I can post more often, but…. one never knows 🙂

More soon


Some progress on the medical frustrations and yet another fight

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

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

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

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

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

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

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

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

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

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

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

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

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

More soon…. 

Known VS Unknown Environments and FMS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More soon….

How we pay for goverment services, with time spent

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

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

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

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

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

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

( And we wonder why the state is broke ?)

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

Welcome to my world.. 🙂