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Posted 2/9/2006 12:15 AM (GMT 0)
Continued from "Starting Remicade"

please....whatever's on your mind or in your heart & need to get out.

erin

Posted 2/9/2006 3:07 AM (GMT 0)

Black Jack, I hope what happened with your son and friend can be worked out and not be life altering.

You are too hard on yourself. We're all here for the same reason.  You are going through a lot physically which is affecting you emotionally and mentally. It is hard to take a step back, but you need to reasses your situation with your wife and figure out a game plan until you are better. Not all of this pain and fatigue will continue on a daily basis. I truly feel that once this infection is gone and the antibiotics are out of your system (which can take weeks, if not months after you complete them) you will feel better. Yeah, you may not be doing cartwheels due to the RA, but G-d willing, there will be improvement. I know it doesn't seem like it, we've all been there. But, it is going to take time and you can't be running 24/7 if you want to get there.

Take care.

**

Posted 2/10/2006 8:09 AM (GMT 0)
Erin, thank you for starting a new post. Good title, good thread. I see that we are all grapefruit-sized balls of rubber bands.  I don't know about you and CaMama and Ducky, but I've been wrapping rubber bands around my complexes all my life, the way some knit when they have free time; only, my growing mass of nonsense is not healthy.   CaMama, I am thinking of getting out of work for awhile; I wish it were for good. I'd take time to heal, then do some teaching and write about my life. When I do, I will send you my stories and essays. I have had many lives and many deaths.  Erin, I will write in detail tomorrow.  It is late and I think I have tomorrow off, a vacation day, but I have to teach at 8 a.m.   I've been home yesterday and today.   CaMama, Tuesday I hit the wall. Ironic: I was talking to an elderly woman I know and she was full of life. It was just past noon and I HAD TO SIT DOWN WHILE WE TALKED.  I had nothing to run on.  You know a lot about medication and I value your knowledge. Thank you.  I took my 28th Levaquin pill Tuesday night.  Now Tuesday was the worst day I've had in my nine month nightmare. The exhaustion opened the ground and I fell deep.  But I am worried very much:  Since I have been unable to take the Enbril, my two lowest disks, from the Ankilosys Spondylitis, must be compressed.  The pain has been unbearable from Tuesday through this morning, Friday.  Not only has the pain run down my left leg, but I have joint pain in both hips now.  Yesterday, both sides of my back hurt, where the kidneys are, and today I had a shooting pain into my right testicle--two different times.  They almost dropped me.  No Levaquin in over 48 hours now, if I am thinking clearly.  But I have to tell you this: my entire body aches from the inside of my bones and joints outward.  And the damage to my right fingers, right elbow--and forearm, my lower back, which have been a big problem since before the Levaquin are deteriorating. Because of my forearm being separated from its socket, I have a lot of pain--because I refuse to stop being a man.  Just like a man, huh?  I don't want to age like this.   I told you I work in a sick building and today a union rep in the building, who is involved with the conditions and studies going on, called to see if I had decided to get out of the building. My options are limited. But, as we spoke, we both realized that if we don't accept financial hardship and just walk away, or go on workmens' comp for a little over a year (which will create enormous antagonisms and repercussions at work, and that stress may kill me)--well, we either have to get out, resign, take workers' comp for a while and let the punishment come later....or we risk getting sicker.  And my rheumy warned me that I will need my sick time once I'm on remicade.  Only if and when I get sick once I'm taking it, will he support me and try to get me out of the building....Yet, he's not going to be able to save me from all the garbage that will come.  There's mold in the ductwork and the huge printshop in the building vents into one of the floors, not outside.   I have so much stress in my life that I think it is pushing my p/a and spondylitis along.  I will always have stress, if not for conditions in my life, then for underdogs.  I have strong feelings that too many people want to hurt others or have a philosophy that if anyone gets hurt in the pursuit of their own personal goals, then, so be it.  No, I cannot accept that.  I'm not a doomsayer, but I have lived long enough and in enough situations--for years with the poor and the minorities, for whom I have great concern and affection for--I see that society is regressing. Instead of moving in a mutually beneficial and loving direction--from individual, family, group, clan, to a society that gives everyone greater security and health--instead of this, I see society, to a degree, unwinding.  People are staying home; they are spectators in front of the TV; they keep their heads down in public, lest they see some wrongdoing that they should help correct.  Many times I have gone to the aid of a victim, while neighbors, co-workers, etc., have looked on, often with gladdened anticipation.   CaMama, time will tell if the Lefaquin has made me temporarily worse....but it has not cleared the prostratitis, and I am scared.  I should trust my intuition. I need to drop back, drop out of the race to nowhere for awhile.  I am killing myself and I know it.  Still, my several arthritic diseases are real and progressing. I have never had such pain.  The low-dose percs I have are going fast, though the rheumy told me to be conservative with them.  Why don't doctors know that the diseases they treat bring terrible suffering very often.  One look at me, and anyone can tell that I am fit, neatly dressed, kind--and overly healthful when I see doctors.  I am the prototypical grown-up abused child: "All the world's a stage," and I will not let on that "Mommy" has cut me and cursed me and humiliated me.   My depression is coming on like the seventeen-year-old student in my class--her father had p/a and would be my age, if he hadn't died three years ago, when she was fourteen.  Her crush on me is no chimera, and, "God bless the child," I am a helper and a teacher, not a lecherous user.  She is one of my children.   My point is that my depression has a stronger will than I do, a personality I will follow.  And it has taken me away from myself for many years at a time....A loss to my family, never mind myself.    "Tomorrow, tomorrow, tomorrow": I will tell you about my son, and I hope to God that I have good news, as well.  And, no, I cannot repair my long and deep friendship with a man who chooses isolation and a Go#$$%%#yourself attitude when he is on a binge.   Thank God for you all.  Do you remember that I posted my e-mail?  I do not wish to be anonymous with any of you.  Blessings and poetry in the morning to you. The moon has been white ice in the daytime sky.  Makes me feel a fleeting sense of home in my life.  Black Jack the Jack of Hearts
Posted 2/10/2006 4:18 PM (GMT 0)
oohhhh black jack for give me for jumping in on this thread but i took leviquin IV for a botched anal op that got infected ( they removed two small suspicious cysts in the peri-anal area) and the doc who did this didnt give me any AX to go home with. it was an outpatient op in april 2002 and three hours later i had spiked a 104 temp and rushed to ER room she put me on IV leviquin and boy that is one nasty drug.

 

it ruptured my achiles tendons and made me sicker then all get out.

this dingbat doc told me i had to have ER debridement on my peri-ananl area as it was necrotic in just 3 hours from her doing the op in the first place. if i waited one more hour it would have been septic/sepsis and i would have died  b/c it would have gone into the blood stream.

they had to take the stitches out in that  tender area and do a debridement and let it heal from the inside out, meaning not sewn up again.

not a fun thing to go through.

i was so pissed off at her ...what kinda doc does an op on this part of the body and doesnt send home  a patient with AX to keep it from getting infected.

i think she did it on purpose to get more money outta my  insurance. sounds sickening doesnt it.

this is just one example of how i have been badly abused by doctors for my insurance card.

i had a NS do a posterior op ( later found out from another doc it wasnt necessary to do it) that almost killed me as i needed 5 pints of blood, and neither she or any or the nurses ever documented that i had 5 pints of blood, whole red blood transfused, but it was on my bill and i saw it go into my arm. now the NS  did the op,  and it was done wrong and has to come out, all those plates and screws she put in, welp i am not letting anyone touch me ever again with operations, only if it  is life threatening.

 

i could go on and on but i cant stand the thought of doctors anymore.

 

Posted 2/10/2006 5:59 PM (GMT 0)
Holy cow, Missie - that type of negligence and oversight is unacceptable. I know we are in dire need of doctors and nurses, but that doesn't mean we can accept bad ones.

black jack - start investigating, I think there are other means to get support for sick building syndrome than just your Rhuemy.

Let me tell you, I've been in and out of the hospital and (according to my PCP) almost didn't "make it" one of those times. IT IS NOT WORTH IT. No matter how fulfilling your job might be, no matter how much you do not want to be going through this, you need to take a break and do your best to heal. Forget about the stress of trying to return in the future, you may or may not go that route...right now, your job is worsening your health. You have a family to be there for, a loving wife and 3 kids - the job is just a job. I've lost 3 job due to illness - it's taken a lot of time to accept that I need to work on myself and get better...I kept pushing and trying and failing. It sucks. I'm only 35, but I have to have hope that in time I will be better enough to move forward in my life - and after all these years, I am getting some relief, so I can finally have stronger faith. I know I need to be here for my 2 small kids and husband. Though my health issues are stressful to everyone and our finances (due to lack of income and health needs) - it's better for me to be alive and here than in the hospital or something worse - after being too afraid to fall asleep a few years back, in fear of not waking up, I realized how improtant it was to be here. That doesn't mean my depression still didn't overpower that realization often.

You are going through A LOT right now, I told you before, we ALL have to go through a mournning period when we realize we have to make adjustments due to the illness we cannot control. It drives us all out of our mind. It causes us depression. It take a long time before we can accept this, and yet we will still always fight - human nature, if we didn't we'd all go to bed and stay there under our covers. You can fight, but you do need to adjust so your fight is not in vain.

I may not be back online until after the weekend, so hang in there, I hope things start getting better for you. I'm so sorry the infection is not clearing up, I know how much WORSE that makes all of this. Take care.

**

 

Posted 2/13/2006 6:07 PM (GMT 0)
Thank you, Missie and CaMama for writing. I have been looking for air in a vacuum. The medical system is not what patients need it to be.  Missie, I am sorry for your pains and "rage," how else can I describe it.  I think my doctor wants to be a good healer, but he is a tile glued to the clinical world.   CaMama, my day work is no longer fulfilling.  People are turning their backs on me, gossipping, etc.  I cannot work under such conditions, waiting to be axed after so many giving years.  It's money, money, money. How to support my family.  Yes, I know I have to have a break, but can I allow myself one?  It's the abused child syndrome. Let anyone laugh, the ignorant, the judgmental. But such adults never forget that they are "not worthy" of peace of mind, health, giving oneself a break.   CaMama, thank you for your loving and intelligent persistence with me.  Something's got to give.  I am alone, however--I never did anything kind for payback, but for all the love I've given, not one phone call.  Oh, but my psych: what a mensch. He called me last night--Sunday at 8 p.m.! to tell me I need to stay out of work and heal, just as you say, CaMama, but he knows, since I work for the state, that I will be persecuted if I go out due to the sick building.  Even the governor has gotten in on the problem--after six or so years!  And she doubletalks that the building is okay....However, the print shop vents onto the 16th floor, the air ducts have mold, the building leaks...."We have 'the best scientific firm's report,' and it says the building is HABITABLE.   I have to go back to my rheumy (It's 12:28 p.m. and I haven't mustered the energy to try to get in to see him today and ask him to sign the papers that will allow me to take a leave for my sickness, alone.  The building doesn't have to come into play.  My psych dismisses, as my wife has, that I should not worry about the time I will need later--as the rheumy warned me, like hemlock in my ear--because I need the time now, and if the Enbrel works, I won't have to worry about taking time off.  (I have thirty sick days and forty vacation days saved. And I will earn another twenty eight over the course of 2006.)      You know, you love and protect your spouse and children--I have taken a lot of unsolicited, mean criticism at work for not having my wife work at anything that can cause her to need an operation on the disks in her neck. I WILL NOT RISK IT.  And I've taken criticism for sending my daughter to Cornell--"You can't afford to do that.  No way I would do it," is what I've heard.  NONE OF THEIR BUSINESS, but, darn, Jesus and the prophets from any religion (whistle blowers for that matter!) are proof enough that love and kind works does not get anyone a "Pass Go" card.   I started life in the 1950's and, darn, our society has been unstitching the social net since the 70's, when corporate and individual greed started the unraveling.  And, yet, there has never been a sufficient safety net!  I looked into disability four years ago, for depression. People think state workers have it made. (Yes, they do, if they are politically connected--or rats.)  And, in order to get disability income from state service, you have to resign from your job, a permanent move, and without income or medical you wait six months for a decision.  I see it this way: women were healers before medical science became an "institution"; I teach my children and my students that there is enough evidence to make a believable argument--and I believe this--that women ruled society.  They kept the hearth; without fire, for warmth, light, safety, healthfully cooked meat, all would die.  They also memorized, told, and passed on the history of the clan, the group, everyone's in detail.  The witch hunts, it has been argued, were MENS' attempt to keep women out of the medical Tower of Babel. ( That's a good name for our medical institutions, huh?  "Babel," rightly suggests the crap that's put into our bodies, as Missy's story demonstrates.)  Anyway, look at the movement today to save vegetation and the knowledge about the healing powers in natural ingredients.  Women kept us alive through millenia!  Are women credited with this?  Does anyone think of womens' knowledge and hardship and selflessness when we hear how those natural ingredients were known, harvested, administered?  The number of women who died tending to family and neighbors with infectious deadly diseases? NO, NO, NO.      --Where am I in all of this?  Well, power, money, arrogance, pedestals for the wanna-be-somebody fierce "others" out there,  these negatives are medicine.  The witch hunts, and there are plausable arguments for this, started in Europe in the late 1700's, in order to take women out of medicine.       Okay, I needed this.  But what am I doing? I'm intellectaulizing.  Am I making up my mind to take time off to heal? No, not yet.  Missie, you can jump in any time.  CaMama, thank you for your counsel.  I need it.  I need to have sound advice and care....I need to say the hell with worries.  Part of me knows that good does get people through.  This is day six I am home and this is the first morning I feel loved, loving, and (temporarily??) in charge of my future.  A minute amount, anyway.   My poor wife.  She looks at me with love and hope and I scowl, because I don't know what to do, what to say.   --How about my psych: this man took me in four years ago when my insurance did not pay.  Four or five months later I changed my medical plan to one that would pay him, in the network.  Well, he's savvy. He got some of the money that the insurance wouldn't pay him all those months.  He gave me  a good portion of it, but I gave it right back.  I told him to keep it for the next patient without insurance, that he will take in.  How about his call?   How about your posts and tending to me?   Is it enough for me?  Do I sound cowardly?  It is all about my family.  I cannot put them into financial hardship--we need new everythings as it is!  But, yes, I need to live.  CaMama, my ankylosis spondylitis and the psoriatic arthritis are both autoimmune diseases, one as bad as the other. I did not know that about the spondylitis until the other night, when I looked into it.   Both diseases have progressed, by the way.  The damage to my body is spreading quickly and it is becoming symmetrical.   I will look for you later, if you have time to write.  Today, I must try to enjoy the sunshine.  (The depression, how it nails me to misery and indecisiveness.  Which disease is going to give me the stress that lays me down?  With gratitude for allowed into your lives, all my "true" friends here; with love and hope for your health; with thanks for helping me work toward a decision to save myself.  Black Jack the Jack of Hearts 

Posted 2/13/2006 7:31 PM (GMT 0)
hi Jack of Hearts & everyone,

 

just wanted to share some thoughts on the work/career issues.  you Camama!...hah, so many times i could have seen you last year & this year shaking your head at me saying, "what is this girl doing!?!" nono same with Flopsie & Ducky too.  i'de pour every ounce of me into school & trying to work & trying to conitnue and fight & fight & push & go go go.  you would all tell me to STOP! slow down, and be patient and let your body heal.

                                                    it's hard to do

BlackJack, you danced around the notion of the beaten child and the "not worthy" feelings of taking that actual time to stop, look at yourself and realize what you can and no longer can do.

like me...i am so so petrified of failing.  always was like that.  and many times, seeing myself like this!  i feel like i've failed.  THE OVER-ACHIEVER throughout her life...now look at her! 

most of our regular people here already know my father is a *%#* bag; but he was extrememely verbally & physically abusive, and a drunk, but the drunkard part is no surprise. usually is a package deal anyway. long story short...only had my nose broken once!...and that would be the last too!  but from age 11 till al the way up to last May...i took care of myself and worked and did everything independently.  and the jerk is off every 3 months cruising the world! has more money than Rockafella. dropping $700 on booze & taxi fare a night.  and i'm on welfare?  doesn't make sense & it never will.  he's got a very ill daughter and he can care less.  i wonder what he tells people when they ask about me? 

i left work in May.  it was heartbeaking.  than i was HAPPY!  and for a few weeks i did feel better!...and then i got so depressed.  and felt worse.  that good feeling didn't last long.  & then i educated myself about work and ilness.  IT IS LIKE A DEATH!  A FUNERAL!  there are stages you pass through, just like i stated.  since december i've been in the acceptance part of it.  but i do want to so badly to return.  and i don't want to be OK...i want to be great.

"not worthy"...who are we still trying to gain acceptance from?  i've learned that by me stopping what i was doing...wasn't ANY VACATION!  every day is brutal, hell, torture sometimes....people suffering like this SHOULD BE GETTING PAID!  i do believe though, that by solely dedicating this past year to strict medical treatment and not having the career stress (well, i could never show up to work towards the end, but yeah i guess that weighing on your head is stressful.) ...i do belive i made the right decision {well, in reality had NO CHOICE...but I LIKE TO BE IN CONTROL HERE! lol!}

perhaps next year will be different.

i sure hope so. 

Posted 2/13/2006 9:20 PM (GMT 0)
hi erin and black jack- what sticks in my craw is the fact that i have been to so many so-called doctors who attempt feebly to heal me only to make me worse for one reason or another -for protfit and ill-gotten gains on their behalf and have turned this medical oath they took into a facade of lies, skewed results, half truths and deception on a multilevel basis.

black jack i could tell you stories that would make your hair stand on end and that could make any tom clancy novel into a kiddie booklet.

 

i am refering to the mother of all evils, 'greed, for lack of a better word, is [not] good' ( 1987, film, mich douglas Wall Street).

 

when doctors throw their oaths away to pay for the hundreds of thousands of dollars they have to re-pay for medical school, it is easy to get  caught up in a web of lies and deceitful behavior especially if the doctors intentions initially were to churn the system and make as much money as they could come what may.

 

When top level hospital exeuctives begin accepting bribes/kickbacks from temporarily staffed doctors and get kickbacks for each patient operated on, and  the exc allows that doctor to perform at their hospital, it is time for an overhaul of for profit hospitals.

 

when government allows unworthy doctors to continue and go unscathed it is time for a system wide overhaul.

when the legistratures ignore the needs of the people and their citizens and look the other way as they take graft, it is time for revamping.

 

in this state of florida like many other states it is time for a different way of thinking, training and doing. but this is not so easy since power makes people do things that are wrong. but this is nothing new, it has beeen going on for hundreds of years and not just here but in other countries.

 

i am not the only one who things like this has happened to, i just speak up about it more than the usual person who embarassingly dont like to say, think or feel how stupid must i have been to have been allowed to not notice the abuse visited upon me.

 

when you activists who try to reform the system, they get killed.

upper echelon doesnt want the staus quo changed they like it just the way it  is.

i think there are lot more people who care to admit that they too, have been burned by a system of unethical medical care, who they trusted but have been hurt by.

its like being married to a bad spouse, and you get divorced, after that who wants to go through it again?

 

 

Posted 2/14/2006 4:09 AM (GMT 0)
CaMama, I am crying as I write this. I went back over your letter to me, from 2/10; how you hit me! You're absolutely right. I am fighting the wrong fight. Yes, the depression is unbearable again.  You've made me stop and think about what I've been suppressing. I'm going through all the stages of grief. I have died. But I won't accept it.  I am raging all the time. I am cursing myself for being a man of fears, which has immobilized me.   And, CaMama, you have been through it.  I know what you mean about not being able to go to sleep, lest you not wake up.  I went through something similar about ten years ago. I had a kidney infection and my urologist--no longer mine--kept throwing demerol at me. I was so sick, and no one knew how close to death I was. I wandered the rooms here while everyone slept.  My neighbor stepped in by God's grace and drove me to the doctor's office, where I was physically brutalized.  The details are not important here, but that lousy doctor went into my private with a hook and extracted, with a lot of difficulty, a stint that had been inserted weeks before. No anesthesia,  no kindness, no skill. I still have pain where the stint was ripped out.  And, of course, I went home wounded. Who was I to reproach the doctor?  But your condition was, surely, more serious.    CaMama, I changed my appt with the rheumy. I am seeing him in the morning and I am going to ask him to fill out Family Medical Leave papers.  Yes, I have to say to hell with the job, with the ogres (real and imagined).    You know how alone you are when you are seriously ill.  Me--I am trying to get someone to tell me to stay home, that I am never going to survive on the course I'm going.  What a baby, huh?  And, yet, I have built my life, my family's life, in a fashion that is working against me now.  There is no one to step up and help me with the earnings I need. I have a system, that drives me nuts, where I have all of the bills dated; some I mail so that my paycheck will be available by the time they arrive at the credit card companies, and so on. Other bills, I pay in person.  I am always in a deficit of four or five hundred dollars.  The bills are a constant worry, as you well know.    Paula gave up on me about six hours ago.  She cannot take the stress of my moods, my anger.  Also, I know that she feels guilt for not being able to secure work that her body can handle.  Everything else she does is platinum, however.  And, yet, money.  My peverty as a child, the ghetto. (So, many good people there, but always a dangerous and stressful environment.)  Everything is too much for me right now.  I am exhausted, yet I cannot sit still. I cannot proofread my poem and write my three paragraphs for publication.  I cannot think.  ....And to have loved a man who is an alcoholic and who is bitter.  Love is not always enough.  We can all wound each other at the worst of times.  Thank God for you and my friends here.   Yet, I have to let go, don't I? Somehow, I'm in this airplane witha parachute on my back. If I don't jump, I will be pushed. And that will cause me to lose my grip, my small grip, on what is happening to me.  Yes, I need to act, not continue to react.  Oh, CaMama, thank you for sharing your trials with me.  Aren't we lucky, to have depression?  It is a killer of its own.  And no one knows that how it stalks us, condemns our very essence, and how easily we listen and believe that malformed, evil voice.  I hide the depression, and everyone says how well I look, how young.  Sure, young. I don't eat. When you're thin you look young, and, being a brawler, I won't show weakness in the company of "carenots."  I made a mistake by researching the ankylosis spondilytis. I did not know that is as severe as my psoriatic arthritis.  You know, I won't give myself a break because I think I have to prove to others how sick I am, how much pain and fatigue, how much danger is down the road.   Well, I can think good things for you, now. I can send my will your way and try to move you closer to healing, to help you settle your mind and know that your children are not suffering because of you.  They are learning, instead, that people can suffer by no fault of their own, not by sin, not by evil thoughts and deeds, not by sloth, not by intention.  They are finding their compassion, CaMama. Who knows? Maybe you will have a healer, as I have in my Lisa. I mean her natural goodness and love--not that she is not a fighter and that we didn't battle. Passion between parent and child is love and love brings good times and bad times, but always resolving in good times, good memories, and in the knowledge that bonds are increasing and they will sustain both parent and child in the future.  Even Johnny and Francesca, who are not overt in their concern, love me more as I share my suffering with them.  Oh, God. I didn't know what I just wrote until I wrote it just now.  I was thinking of the way Francesca looked over her shoulder at me tonight, seventeen next week and in that look I see now in retrospect that it was a look of committment and kinship.  And Johnny has been reading about my illnesses.  He still needs me to be the strong one here; yet, his reading tells me that he is preparing to know how to help and understand me in the future.   Okay, CaMama, there: an enlightenment and a sudden joy for me.  And, I hope, a new pair of glasses for you--one through which you can see how your children are benefitting from who you are, what you suffer, what you rejoice in.  As long as we give them love....And we do, we do.   I hope you are doing okay.  I hope that my other, close friends are doing okay.  I just wrote myself into a wedge of peace. I'll try to squeeze into it now and make up with Paula.  We've been married since 1977.   Missie, I hope you will keep writing.  Love to all.  Wish me decisions in the coming days, and that I can believe that I deserve a break.   Black Jack the Jack of Hearts

Posted 2/14/2006 5:33 AM (GMT 0)
Black Jack. I'm so glad you are going to take some time off. It stinks beyond belief. Like erin, I want not to be "just okay" I want to be GREAT - we all do.  I have lectured Erin many a time about over doing it. I have learned my lesson the hard way, and unfortunately, I think we all have to learn that way. There have been way too many times in the last 3 years I prayed to "make it through this" so I can be here to help my kids grow up. Sadly, there have been many times over the last 10 years that I have thought that maybe if I just fell asleep for good I could finally be at peace. Between the pain and the inability to even live life for status quo, I feel like a worthless and useless human being and figure maybe my husband and kids would be better off without...however, I love my kids so much that the thought of not being here for them tourtures me and when my health deterioates and gets the best of me, I get scared out of my wits that I'll either not get through this one or that G-d forbid something will happen making me worse off than I am.

The psoriatic arthrits has really beaten me. My immune system is just too low. Case in point - I'm still suffering the after effects of this flu and ear infection. My chest is killing me tonight as well as my throat and head and I feel rotten. So, I'm not in the most positive mood, I apologize.

Get the time off, you need it. I'm so glad to hear the positive you are witnessing with your children. That is wonderful. They are nearing those rebellion years where they are learning to be adults and pull away, but still depend so much on you while they are trying to become independent individuals. What you wrote about them tonight is beautiful and heartwarming. It shows you are doing good by them.

Make peace with your wife. I turned my back on my husband for way too long. We've only been together 15 years, but so much of that time I have been in pain or unwell. It has, to say the least, made our marriage rocky - we have some major swings in our relationship. Much he just doesn't understand and that doesn't help.  

Take care and good luck at the doctor's tomorrow. **

Posted 2/14/2006 6:12 AM (GMT 0)

i  have  felt very powerless by the system, medical/insurance/ss admin, since my crash in 2002. after being a productive citizen for many years, i was not anymore and suffered a loss of my health and income also, as this goes hand in hand i think. and everything which goes along with that. loss of relationships, self esteem, depression, frustration etc.

but i would like in some way to use the information that i have come to learn and know in a positive  way to help others to stay safe from bad doctors who hurt, maime and abuse. this is very hard to do since the power brokers are the insurance companies and government rules the usa. those who we trust to look out for or be watchdog for citizens are powerless also to some extent b/c of they are held captive by the red tape and paper work which can last for years to complete and be investigated. I was actually persuaded not to 'bother' with filing complaints b/c  'no good' would come of it, short of getting Geraldo rivera involved.

we can strive for change like during the 1850's-1920's womens suffrage until we got the chance to vote and became equal citizens in 1922.

but that was a long hard battle and needed alot of support to win. what i am getting at here is that there is a way to change the system but it is a very time consuming and lengthy process. i am talking about medical doctors and the schools that train them and government /FDA who approves medications.

i believe people who have been harmed have the right to speak up in a non-slanderous,  non-defaming way to let people know who and where the bad doctors are so that you  can have a choice not to be abused. some civic minded people try to go undercover to find out the schemes and frauds by 'creative bad' doctors to bring them to justice, however, these same docs crop up in other states to practice in other areas of expertise.

medicine and medical doctors is the only profession that you can legally injure or kill someone by error and get off scott free w/o any reprocussions, if clever enough to hide the boo-boos which most or many are savy enough to do.

when you have the power of knowledge behind you and you are an authority on such esoteric issues, it is easy to be beyond reproach. when the doctors all join together to protect one another in their code of silence to cover up mistakes or skew truths, how does one propose to fight this?

when the government takes away the peoples right to sue for compensation for gross negilgence, errors, miscalculations, improper diagnoses and malpractice, we are at a loss to recover any justice. the bush government ( esp in fl) is not favorable towards individuals who have been harmed ( jeb bush, governor) since the enactment of med mal practice caps in monetary values for anyone no matter if you are 20 or 60 yrs old, your rights have been seriously compromised if you have been injured. it is not the attys fault, it is not the insurance companies fault, it is the fault of the serivce providers who give bad care through acts of ommission, commision, negligence, ineptness, lack of skill, training, or ability.

how do you explain to a 20 yr old young man with his whole life ahead of him that his doctor misdiagnosed his illness, treated him improperly with incorrect  medications, over looked allergies to cause him to lose his life earlier than planned or cant use a part of his body anymore. tell that 20 yr old you can only sue for 500K cap no matter what or how much insurance the docs has or not, but this will have to support you for the rest of your life after attys fees have been taken out?

500K less 30% atty fees/expenses doesnt come out to very much money over 15 years we are talking about 20,000 a year and if a person is expected to live to age 60-70 it isnt gonna cover future med expenses and support. the doctors all know how to play the system and/or like ken lay, put  everything in his wife's name to avoid be tapped personally, or the state of fl has annunities that can not be attached, along with the homestead law which does not allow for his multimilion dollar estate to be attached.

there is no accountability anymore to hurt betrayed people whose lives have been ruinined. we are seeing this kind of behavior in all areas of business now also, enron squandered pensions and grossly took advantage of the empolyees who are SOL.

but because the government doesnt hold anyone really accountable anymore for misdeeds, people do not have to be accountable then. i know the system is not perfect but why cant we train doctors to become ethical and moral instead of just taking a oath to uphold life and first do no harm make it o**** for something rather than viewing a patient as just another insuracne card?

i know my rant may bore some of the folks on this forum as i sound like a broken record   and go on and on about it, it is only that i feel so strongly that something should be done to help this catch 22.

i feel if we can hold the doctors to higher standards and levels of care, we can weed out the bad ones and make sure that the newer people who are being trained do so in a proper way with correct ethics and values. this of course comes from the family instilling a moral background during childhood rearing.

Posted 2/14/2006 6:57 AM (GMT 0)
Erin, Missie, CaMama, Duckie, A website where one of my poems appears. You'll know me better--is that a good excuse for leading you there? I want you to know me. http://www.disquietingmuses.com/nov01/kennedy.html This poem was nominated for a Pushcart in 2001. Missie, I just posted one of my nightmares with a doctor. Erin, How are you? I feel as though we've stopped talking? I feel as though I've made a fool of myself on these pages. I'm still trying to ride into Dodge City on my reputation, right? I'm just a fool. Erin, I was abused, no dancing. But, I fought against it. I stayed in pool halls with the best of the best, in Astoria, Queens, and went home at 4 a.m., 130 years-old, and glad to see my mother hanging out of the fifth-floor window: "Worried sick over me." "Yeah, yeah, yeah. She loves you, yeah, yeah, yeah, yeah. With a love like that, you know you should be glad." Yes, I made up a lie to the emergency room doctor when I was twelve and my mother put a knife in my leg. She threw it like a circus performer: it stuck out of my thigh like a coat hanger and I yanked it out without wincing. I was mostly upset that she'd ruined new jeans that I loved. Overachiever? Books were my attic room, cold comfort, a meeting of misfits like myself, survivors, smokers on the frontline. Yes, my mother is rich, too. I could have walked away with 100, 150 thousand when I left NYC at 22. But money was the only thing the monster at home loved, so I set out for the world broke but brave; she invested money awarded to her children, yet I wasn't going to walk away, legally, with poison. I became a voice for the victim, a father to myself, John Henry against the machine, a questioner, a moralist, sometimes stoned out and on the wild side, but always kind and vulnerable, then back to school, success as a writer/teacher, but couldn't join the trolls whose greed was endless. Missie, I interviewed and hung out with and corresponded with Dr. Richard Selzer, a surgeon from New Haven; retired now, but the first doctor-writer, if we discount scientists Loren Eisley and Lewis Thomas. Wrote a book about his work; press ran out of money; Selzer has a gentle soul, a brilliance for metaphor, but he is a doctor, nonetheless, wanting his payday. Yours, Black Jack the Jack of Hearts
Posted 2/16/2006 11:25 PM (GMT 0)
hi Jack of Hearts,

 

i will be sure to read your poems!  thank you.

 

i haven't been feeling well.  worse the past 4 weeks but the past 2 weeks have been even moreso.  since monday, undescribable weakness.  feeling very flu-like minus the sore throat/snuffy nose thing.

very draining just to check my mail.

hoping this passes soon & it's just perhaps exhaustion or adjusting to new medication.  but i can truthfully lay for hours without getting up, no desire to eat, keep falling asleep, my bones and muscles ache (which is unusual because it's normally just my joints).

went for bloodwork yesterday & have been wiped out since.

 

just a little slow.

 

still here though.

 

sincerely,

erin

Posted 2/21/2006 7:02 AM (GMT 0)

CaMama, Erin, I,too, have been in bad shape this past week. I started to get worse about three weeks ago, with many days of rain....I am so miserable that I haven't been able to write--I don't want to bring you down, friends.          But, Paula told me this morning that you, CaMama and Erin, are not doing well. So, I am writing to say I am thinking about you, that I understand you, that depression alone never made me feel the isolation and uselessness and sense of death that I feel now.  --But we are in this together, aren't we?  Thank God we are together here.  Even when I am not writing, I am thinking of my several friends, healers, confidants, and soulful friends. Like a good New York City bakery--You know what I mean, Erin!--this is the only place in town to go.     CaMama, the psoriatic arthritis has me on my knees. And the ankylosis spondilytis is a hell of a kick in the spine, just in case I'm not feeling dead enough.   CaMama, I know how you feel about being worthless, but you know that you are not.  You have a good voice inside of you, and it keeps you going; it keeps you dealing out darned good advice and educated, trustworthy knowledge about drugs.   --Erin, what can I say to you?  I see CaMama walking--rather, shuffling, as I am now--in physical pain, weakness, and with a sickness in the spirit that is like a rodent chewing on your spinal column. She wants to yank out that pain, I'm sure, as I do, but where is it? It's in "the cards we're dealt"; in the unfairness of so much suffering in one life; in, thinking, finally, that there is no fairness, just randomness, just a deal of the cards--and, ah! how often we come to the table with earnestness, honesty, our souls open, while the dealers are withholding their cards.   Erin, I want to say to you, "Get up." Rise from your bed. You are loved by me, by CaMama, Ducky, and many others."  I wish, Erin, that as Lazarus was pulled from the lure of sickness by Christ, that my words tonight could do that for you.  I am too human. I cannot perform such miracles. Yet, if you know that you all have let me into your ring of love, then you know that my love goes out to you.  I am the Jack of Hearts, remember? I am the one we all wish for, the one who speaks from the heart, who is not afraid to do so, who says what many revile and shrink from, because they are afraid of mortality and the need to express our love and concern for each other whenever and as often as we can.   Erin, CaMama, you and Ducky have given me the courage to get the papers from my doctor so that tomorrow will be my last work day for many weeks.  I cannot go on.  I, too, have no energy--indeed, no desire to have it, too often.  The cards we're dealt? In the six weeks that the unopened Enbrel has been hibernating in my refrigerator, I have sustained the same damage to my left elbow and hand and fingers as I have had in my right arm.  I can't drive anymore, really.  And I have to. Yet, my elbows throb with pain after driving only a few miles. Imagine?  I am losing my strenght, my vitality, my mind.  And if I am driving for about a half hour, I cannot keep my eyes open.  My eyes want to close and my body wants to go to sleep--and I nearly want it, too. CaMama, if I could fall asleep driving 65 mph.,without fighting it, well, I think that would be grand.  Everyone would be relieved of my rages, my sadness, my crying, my drifting away, my yelling....We all have to accept that we have died, but we all know that we are being transmogrified.  Our pain is making us purer, no?  I go into rages because the few good friendships I worked at over the past ten years have all dissipated, due to tragedy, jealousy, alcoholism, and so on.  I am alone now. Not one close friend.  CaMama, you have been married fifteen years; I think it is safe to say that your husband loves you deeply and he has a heart for your suffering.  Perhaps his heart does not speak of it,not everyone can allow that. Paula and I married in 1977 and most of our married life has been a game of leapfrog: a year of happiness, two, three, four years of my deep depression, my self-isolation.  Now I am six feet under again and I cry like a sissy, so self-sorry.  And my body gives me such pain now.  I am beginning to approach where you all are.  You know that I am only here tonight because you, Erin and CaMama, are hurt and sad.  I am, too. My hips went out last week and that pain is tremendous.  I hurt everywhere, and acutely.  Now I know what a flare-up is. Oh, the knees, the elbows, the fingers, the ankles giving way on the stairs....ad infinitum.  And my doctor is still making me stretch two week percs a day.  Is that right? What's right?    Okay, I have jammed in my complaints here, though I am here to say that what hell it is to be sick like this.  We know isolation, don't we? Erin, I am scared as hell about taking time off.  Whither goest my courage, my grit?  As you are, I am afraid of failure.  You know, I have not been able to write three paragraphs for the magazine where my poem is going to be published. I risk being dropped. Yet, I cannot think clearly.  Isn't that something?  Oh, my friends.  Look at all that I write here. I am trying to touch and be touched, to heal and to be healed in the spirit as much as we can do that for each other.           Leonard Cohen's  words, the man suffers still.  Yet, his words are not depressing, as some think, who do not listen closely. In this song, whose title is the first phrase of the song, he lifts his painful body and mind and prays to God, who is the holiness and charity and love that is in the human heart, if if be expressed, if the spirit abides:  But, I am wrong to try to define God.  It is not my place.     I will, however, write some of the song here, in the prayerful spirit and wish of it, for you, my dear friends.  And I repeat them in thanks and the realization at this moment, that the friends, the loving and loved friends, I have always wished for are here, are you.                                                              "If it be your will, if a voice be true. From this broken hill, I will sing to you.  From this broken hill, all your praises they shall ring, if it be your will to let me sing.       If it be your will, if there is a choice, let the rivers fill;  let the hills rejoice; let your mercy spill on all these burning hearts in hell, if it be your will to make us well.  And draw us near, oh, bind us tight. All your children here, in their rags of light.  In our rags of light, all dressed to kill, and then this night, if it be your will, if it be your will."   Love, camraderie, prayers for your health and the peace of mind that too many storms tear out of your and my hands, for thanks that I have you, Black Jack the Jack of Hearts  (I am always thinking of you friends, though I do not have the energy or presence of mind to write.   And, Ducky, tell me how you are, please. Let me hear from you. I am thinking of you, as I have said above.  Missie, find peace.) 

Posted 2/21/2006 1:53 PM (GMT 0)
Oh the Cards We're Dealt... such a fitting title to this post and my somber mood... I am here, but unfortunately not doing so well... I am sorry I haven't posted in so long, but I am having a tough time right now... not real sure why, but I know it will pass, it is just taking a little while longer this time... I have read all your posts and they ring so true... I wish us all a bit of relief soon... Duck 

Posted 2/21/2006 6:30 PM (GMT 0)
thank you Jack of Hearts,

 

words that were much needed and pretty much sums up a vast amount that people cannot articulate in one sitting.

 

you take it easy.  take it as it comes, or as my 12th grade history professor would say, "...take it any way you can get it..."

 

it's a very strange transition doing the papers to leave work, very strange...and an awkward feeling too you get when doing it.  but your health & well being is most important.  i wish you well and the very best with this process.

 

Paula seems like a gem.

 

til later,

erin (in better spirits)

Posted 2/24/2006 4:13 AM (GMT 0)
Ducky, Sorry you're still not well. When you are like this, especially for too long a stretch, do you feel as I do: In an anxiety dream, where you have not only missed the bus, but you're back in your childhood surroundings--and going back is a weird trip? 

I a borrowing the following words from Dylan, as a sign of my wish for your well-being and my affection for you:          "If you're traveling the North country fair, /

                 Where the winds hit heavy on the borderline,

                 Remember me to the one who lives there.

                 She once was a true love of mine."

Erin, Glad your spirits are better--mine are still angry, hidden yet between my nights and my days.  (A play on words, but in truth.)  You always lift me with your kind words about me.  You know what? They work. Thank you.

Yes, a strange transition from work to sick leave.  I went to the office at 4:30, told one supervisor, the one good guy in supervision, then rode the papers up to the 19th floor.  I planned my leavetaking well....and minimized office knowledge of my leaving.  I said good-bye to two black women, prayed with one, Barbara, for an hour, and brought her two gifts for her birthday.  They are items I picked up for myself--about black heritage; I have always had so many black friends, that I try to stay in touch with their culture. Still, I am a foreigner sojourning safely, but with homesickness, among their beauty and suffering.  To the point: I cannot, like Picasso, embrace African art, of all kinds--except for the blues. I studied finger-picking country blues on West Fourth and Avenue of Americas, in a studio above the Waverly Theatre. I'm sure you know the are; it's the Village!  I fell in love with the bluesmen who started blues and then jazz, and created a stage for rock-and-roll. The British Invasion was country-blues songs electrified and amplified through twelve to sixteen giant amplifiers. A standard is   Blind Willie McTell's "Crossroad Blues": "Wake up, mama, turn your lamp down lov...." While all of my friends were exclusively white-band lovers--and I was, too; I was going alone to sparsely attended concerts by some of the last of the great early-twentieth century country-blues artists, as well as the black innovators of electric blues and, also, jazz.  You know, Erin, I cloistered myself for years, as I learned to pick and rock their songs on guitar, surrounded with vynil LP's, that I had a Texas accent as a college sophomore.

Anyway, I have never felt worse. Today I feared dying. I am not only in such tremendous pain in old and many new places--so saddening--but I am completely devoid of energy. I feel as though my body is in a coma, but I can speak. Truly, I am scared.  I saw the urologist yesterday, the good one, on day 43 of my prostatitis, and I still have it.  He sent my prostrate milk--Oh! what fun to give freely!--off to a lab, to see whether germs grow. Either way, the white blood cell count is high--has been in my entire body for about nine months now.  When he gets the results of the culture, he will call and we shall talk about options.  Do I have any.  Still can't start the enbrel. More damage in the meantime. My rheumy lowered my weakest dosage of percs to two a day and I need four or five. Yesterday I went the day with only two and it was hell. I tried today, but my hips are bad. I wonder if it's due to the psoriatic arthritis or the ankylosis spondylitis?

I want to graffitti Connecticut with "Why me?"  But, then who won't do the same about their lives.   I don't know if I can live like this.  Of course, I have to, but I'm "stuck inside of Mobile with the Memphis blues, again."  Though, my version of the song is all keening.  I cry for my old self.  It went so quickly....and I am still picking up, doing washes, etc., today, though I am dead and bitter.  I just keep fighting having to stay in bed.   But I will.  I am writing a lot here because I feel so good writing to you friends, but I put it off because my back is killing me now, as I knew it would. Erin, for you: " If you see  her, say hello, she might be in Tangier. She left here last early spring. She's living there, I hear.  Say to her that I'm alright, though things get kinda slow.  She might think that I've forgotten her. Go tell her it isn't so....She still lives inside of me. We've never been apart." --Dylan.  I'm remembering you, Erin.  Feels that way.

Love, health to Ducky, Erin, CaMama, and anyone else who reads this.  Wish me luck. I'm freefalling in a volcano, wondering why the medics never came while I hung on the craggy rim for over nine months.   Black Jack the Jack of Hearts 

Posted 2/24/2006 1:53 PM (GMT 0)
Thank you for your words Black Jack... yes this is so hard to get out of, but I am trying.. I have been talking with my hubby alot and letting him in on some of the anxieties that I have been dealing with, and he is very supportive... so that is making it easier on me... but it is still hard.. .I don't want to burden him too much with it 'cause I don't want him to tire of me and my issues... When are you supposed to get your results back from the urologist? Does anyone find it odd that you are still dealing with this 6 weeks later? Why is your rheumy lowering your dosages? That makes no sense... Take care Jack, I know it is hard, and it seems as if there is no light, but we are here and so is Paula... lean on her and lean on us, that's what we're here for... rest easy and we'll talk to you soon... Duck
Posted 2/25/2006 5:13 PM (GMT 0)
Let us know what the results are, Black Jack. Ducky raises a good question - is anyone (docs)

stating the fact the find this situation odd?

Ducky, I'm glad you are getting support from your husband. I'm glad you are able to talk to him. Take care and I hope you feel better soon. 

**

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