(only)Wise Words spoken here

[Guest guest]

Before I became ill I was a wife, mother of three and had a career

that required long hours. I quickly learned that I wasn't going to

make it unless I cut out the frills. That included being indecisive

and learning to say what I mean't the first time. I think that is

why I depend upon this group as I do. I don't have time to

play " getting well " I'm in lock down, stealth mode now, no time

to " practice " medicine. I need the real deal.

I know that of the few posts I read today, the point was the best

method to attaining this illusive wellness. But what I saw was

decisive , independent thinkers who are taking responsibility for

their lives and making no apologies. I heard such pride even in the

disappointments, the core objective was not missed. The core

objective was to extend life and I can see where that goal has been

attained, which ever way was chosen to get there. I go through brief

periods where I feel pressed against the wall, all alone, with no

dependable source to truly assist me in major decisions. I don't

usually feel panic, but these are close cousins inasmuch as I feel

disjointed, fragmented in not having clear cut objective. Doing a

little of this and a little of that, but not a lot of anything. Then

I get frustrated that I've just been spinning my wheels, never making

any real headway.

I don't know if I instinctively knew that my support system would be

weak and that the ducs wouldn't be much help, but early on I set up

ways to trigger myself into not getting stuck down in the dumps very

long. So, when these frustrating days hit, I have ways of reminding

myself of my true objective. And although I may not be healthy, I am

glad that I can still look in the mirror and know I am still alive.

I've never been one much for compromise and it seems that is about

all I do these days. I'm learning.

So no matter which method of treatment each person has chosen, I can

hear the true spirit in your words and know that the core objective

is still in play. You are still alive. I think it would be safe to

say that there is a lot of pride in the choices that we have made.

Whether they will prove to be right or wrong, we made them under

frightful conditions and we made them alone, without the benefit of

years of medical school. This is courage that most doctors will never

know. I wish that there was a way to attain my health without

aggresive pharmaceuticals, but I fear there is not. We have paid a

high price for health care and more times than not and are forced to

accept less than acceptable service. I have had to bit my tongue on

more occasions than I care to count, to tolerate rudeness, and a

complacency that could be the ruin of men much stronger than we are

given credit for. Even though we place our trust in supportive i.e.

supplemental measure sometimes these supplements are more supportive

to the toilet than to our bodies with my absorption rate at least.

This week I have three doctor's appointments and it has taken its

toll. I'm at a regrouping point on this ID duc as he is clearly

making me jump through hoops because he is ticked off because the

pain doctor sided with me instead of him.

Don't know if I mentioned that in 2000 I was dx with anemia and it

took me 18 months to find a doctor who was willing to prescribe

Procrit. I took the six shots in the spring of 2002 and enjoyed

plump happy red blood cells up until the MRSA this past winter. Blood

tests now show the anemia is back, now in the lack of iron absorption

and not folic acid. But this ID duc is insisting on a colonoscopy and

whole GI song and dance. I see it as just another tatic to avoid

aggressively looking for the offending pathogens and appropriately

killing them. Or in other words pointing the finger elsewhere

instead of practicing medicine in his field, infectious diseases.

This week I'm finally scheduled for IVIG after presenting low IgG for

the past six months. I think if I would do one thing over it would be

not to waste precious time on these various avoidance tatics by some

ducs. To set a time limit. Put up or shut up.... Their intimidation

and manipulation only served to the denial of my own intuition..

Medicine, this is the only field I know where results are not related

to pay scale. I wish there was a national registry where all doctors

would be listed and all patients could post their experiences. I

don't mean to sound angry, because I am not. I am embarrassed for

them and at times even ashamed of them. I know now that each of us

must follow our own instinct. That is why our body presents these

symptoms, to tell us where we need help.

I remember one time sitting in a doctor's office thinking " why am I

having to live this awful existence, the human spirit always wanting

to believe that there is still more meaningful life ahead.

But it hit me. These doctor's probably believe that the only reason

we are ill is just so they can excel to new and glorious fame. I

shuddered as I thought,

" Could it be that I did not live to be the lead in my own life story,

but instead my entire existence has been to only be a bit player,

a 'one line' walk-on in the fame and fortune story of this

doctor. " It was just to sickening to even consider it.

Right now, I'm just truly sorry that the very people who need to

understand what is being said here are the doctors. They are the ones

who really need to know how " INadequately " their lack of care is

affecting their patients... Yes, I know that with the little energy

we have, it is better spent on the positive things we can do for

ourselves instead of a pissing contest with some duc. It is a fight

that we cannot win....probably a fight that many will have to die

for. The sin is that it doesn't have to be this way.

I think it will have to be advocacy from the public that is NOT sick

that will have to take place. Q Public is not ready to hear,

much less accept that possibly an entire generation will be forfeited

just because of the absurd hoops we must maneuver. That it takes

years to get diagnosed and then still we are not treated with

aggressive enough protocols. They don't want to believe how easily

they could be in our shoes. It is the complacency that is our enemy.

Peg