If You're Going Through Hell

[KATPILOT]

That is so great!  A truth like no other.

[Patty65]

Yes,I LOVE that Marg, and THERE"S true friends in that!  Eyore can do without all those other forest friends that scatter away from him!

[Margm]

"Until I get home to heaven, there’s going to be an ache that won’t quit. The grieving process for me is not so much a matter of getting rid of the pain, but not being controlled by the pain.”

This was written by a fellow that was being questioned about why didn't he have more faith, that the process of his loved ones death had been seven years and when was he ever going to get control of himself.  It made the man very angry.  Our grief is our own and no one else feels it like we do.  If they have never known it, they will never understand.  So, when some well meaning person "fusses" at you, just consider the source and if you can, walk away.  

 

One of my friends was dying.  I was secretary to her brother, a doctor.  She needed pain pills.  He would not give them to her.  She said "I hope I live long enough to see you hurt this much."  We got another doctor to write a script.  Not at her brother's request.  He would have let her hurt.  She died soon afterwards.  I will never forget that scene in his office though.  People will not understand until it happens to them.  We do not wish the pain on anyone, but they will not understand as they live now.

[Guest]

4 hours ago, Marg M said:

One of my friends was dying.  I was secretary to her brother, a doctor.  She needed pain pills.  He would not give them to her.  She said "I hope I live long enough to see you hurt this much."  We got another doctor to write a script.  Not at her brother's request.  He would have let her hurt.  She died soon afterwards.  I will never forget that scene in his office though.  People will not understand until it happens to them.  We do not wish the pain on anyone, but they will not understand as they live now.

That is so true Marge. If only doctors had to endure the pain they force their patients to endure, simply because they are afraid of government retribution.My wife suffered EVERY day with foot neuropathy because of her diabetes. She had struggles with just what you talked about. The only difference being that she was never related to any of her doctors. She finally latched onto one that was willing to keep her "supplied", and he was worth his weight in gold to her just because of that. He always allowed her enough hydrocodone to take as many as 3 a day. She never allowed herself to get addicted to them. She would never take more than 2 in a 24 hour period. No matter how her feet were hurting during the day, she always saved them for bedtime so that she would get some relief from it during the nite while trying to sleep. Doctors can be so terribly heartless sometimes. Did someone change the wording of the Hypocratic Oath without telling the rest of us?!

Ya'll Have A Good'un!

Darrel

[Gwenivere]

We were fortunate the hospice we had didn't care about addiction.   Any time Steve's pain ramped up, they increased meds.  There was no doubt he was addicted to them.  But when your time is limited, it is not a time that should EVEN be a concern.  He had to give up driving of course.  Small trade off for quality of life left.

[Margm]

My dad passed in 1984.  He knew he was dying yet he was afraid he would get addicted.  Now this was a lifetime railroad agent with above average intelligence and he knew what the outcome would be.  After the hydrocodone did not touch Billy's pain that came on immediately, not nagging pain, his mesenteric arteries had become obstructed and his pain was unbearable.  They had done the liver biopsy, it was a teaching hospital, and I am sure they let a first year resident do it.  He was climbing the walls begging someone to shoot him.  Then the morphine took control.  Until then all I could do was hold him.  Now this goes on for days and weeks with some patients.  Billy's only lasted a few days and after I had given him about 6-7 hydrocodone in an overnight period and they hospitalized him and put stents in his mesenteric arteries (I thought I was going to kill him, but the hydrocodone did not touch the pain.)  The surgery took care of most of the pain but if he even grimaced, I put a morphine pill in his mouth and was not going to let him hurt.  Nothing I could do in the ER, he was throwing up everything, all his insides, etc.  Hippocratic oath?  That was taken to heart by doctors that would visit patients in their homes, doctors like my old doctors when I was a kid, family doctors.  I doubt if the new ones even take the oath.  If they do, they don't mean it.  It is like politicians, the insurance companies, lobbyists for pharmaceutical firms, and the politicians themselves who make the rules the doctors have to go by now.  I worked closely with 3 family practice doctors, all good men, one might see 20 or more patients, one may see 15, and the other would only see maybe five.  Everybody wanted to go to him.  But he was not making money for the partnership, he thought he was a doctor, a healer, so they started timing him 15 minutes for each patient.  I don't even need to get started on doctors after working over 40 years with them.  But, I will say this, there are still some out there.  With luck you might find one.  Yes, I am jaded even though one of those doctors saved my life.  They sent him for anger management..   

[MartyT]

Just for the record, there is a vast difference between addiction to drugs and dependence on medication for management of pain:  

Addiction can occur without physical dependence; consider cocaine or methamphetamine both have little outwardly apparent withdrawal syndrome but addiction to either can devastate lives. Non-substance addictions such as gambling, sex or internet also have no physical dependence. What is common to all these addictions is the unnatural cravings that prompt the compulsive behaviors.

Physical dependence can occur without addiction; this is the common experience of most chronic pain patients who are able to take their opioid medication as prescribed for pain but don't develop the uncontrollable compulsion and loss of control. A desire to avoid withdrawal is not addiction.

Addiction and Dependence DSM-V -Charles P. O'Brien, M.D.

[Guest]

  That was taken to heart by doctors that would visit patients in their homes, doctors like my old doctors when I was a kid, family doctors.  I doubt if the new ones even take the oath. 

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Marg-I can remember those days when family doctors made housecalls. I can still remember the doctor's name when I was in grade school in Pauls Valley, Okla. Even if all we had was the sniffles, he would come out to the house no matter the time of day or nite. That has to have been 60 yrs. ago, and I still remember his name (Dr. Moore). He never complained and always arrived with a smile on his face. What happened to those good old days? I guess they died when Beaver Cleaver ran away from home?!

 

[KarenK]

Perfect topic for my rant! Another exciting day in my household. NOT!  I took my son to his "new" PCP's office this morning which happens to be in an Urgent Care Center. He was in severe pain and in tears with whatever his hip problem is. His doctor failed to appear on scene again, so he was finally seen by and "old coot"(to use a clean word). He told him about the pain which now extends to his privates and the rectal bleeding. He was unable to do the colonoscopy on Wed. because he suffered a migraine and blurred vision caused by the prep which contained Aspartame which he is allergic to. (that will be rescheduled with another option). He asked this doc if he could have a note to get a couple of days off work just to get off his feet a bit, because standing for 10 hours exacerbates the pain and bleeding. Any fool could see how much pain he was in. This ?doctor? said "Absolutely not. I don't know you from Adam". My son told him thank you for your compassion and told him where he could stick it. I then took him to the ER of our closest hospital(not our favorite), where we spent the next 6 hours. He got a CT and was told they could not find anything. They did UA and bloodwork, also. Something is definitely wrong and they can't figure it out. He did have a back injury last year which may be causing a nerve problem. He declined pain meds as they also make him very sick. He can't use anti-inflammatory meds because of the bleeding. He did get a note requesting time off work for the next 4 days, so he is hoping that "something" will heal in that time.

It absolutely kills me to see my children in pain. I can no longer "kiss it and make it better".

Sorry, but doctors and medicine remain high on my hate list.

[Gin]

Karen,

So sorry your son is suffering so.  It sure hurts to see our kids hurt.  I hope he gets some answers soon.  My grandson went to a neurologist regarding his seizures.  The guy kept looking at his watch.  No encouragement or info on what to expect.  Needless to say,  no more seeing that doc.  Wishing you some peace until this is figured out.

[MartyT]

Karen, I'm so sorry, and I know you must be worried sick about your son. 

[KATPILOT]

Karen that is just horrible. No one deserves this. I had no idea we were living in a third world country.  I hope an answer can be found soon.

[KarenK]

I too, long for the days when we had "Doc Adams" and "Doc Baker". The almighty dollar trumps all.

[Margm]

And we all know how I feel about doctors.  I'm sorry Karen, I don't know what happens to doctors in this day and time.  I have worked very close with many doctors.  There are still good doctors out there, we just have to find one we can wear comfortably, like an Adidas shoe.  Something that fits us.  We search until we find them.  They are still here.

(And you cannot imagine how much of my word salad I just deleted ).  

Some of us knew doctors when they were family physicians and the patient came before all the paperwork. Except it is computer files now.  

[Margm]

Karen, we had the money and the insurance and we have been treated like a cadaver.

[kayc]

Karen,

I am so sorry for what your son is going through and you along with him.  We never stop worrying about our kids...it's freezing rain all day today (and snowing) and my daughter has to drive her husband to work and back in it, I'm worried to death about her (and she's pregnant, it's taken her forever to get there).  I'm going to be worried until tonight when I know they made it home okay...

It's the most helpless feeling in the world to watch your son suffering like that and not be able to do anything.  Prayers going up for him!

[Brad]

Karen - Have you looked into the Mayo Clinic in Scottsdale.  I was so impressed with their treatment of Deedo I switched all of my medical care to them when my GI retired.  Everyone from volunteers and maintenance staff all the up through doctors and nurses are so kind and caring.  Their motto is patient first.  Plus it is extremely rare to need to wait past your appointment time, generally they with take you back before your scheduled time.  Down side is they aren't on everyone's insurance plan.

[Margm]

Brad, a few years back, not many, when Billy and I belonged to the Escapee RV Club I had read from one of the members that one of the hospitals there would not even accept Medicare.  I don't remember when or where unfortunately, and you would definitely have to reach out because Medicare is a necessity.  I think sometimes the large charges are made because they know Medicare will only pay a percentage.  We spent a lot of time around Benson and the Escapee park there, so that concerned me.  I think you would know more about this than I do.  I wish we could go there again, but like Mama said "if wishes were horses, beggars would ride."  I liked the reality of Billy's mom's saying though "___ in one hand and wish in the other and see which fills up the fastest."

[KarenK]

Thanks Brad,

Unfortunately, Robert has low income insurance. He actually works at a Chevron on the "res" and his employer does not have to provide insurance or paid days off. I doubt that he would be eligible for Mayo. I have always heard good things about them.

"No work, no pay" preys heavily on his mind along with everything else. I do what I can to help, which isn't much. Family is family and we can all sink on the same ship together.  LOL

[Gin]

Karen,

Instead of sinking together, let's sail off to calmer seas together and brighter days!

[Brad]

Marg -

I can't imagine a hospital not accepting Medicare, statistically that is cutting out a HUGE part of your demographic.  Twenty somethings rarely need hospitals and when they do it's typically self-inflicted, of course I was the exception back then - the joys of Crohn's.  It's our age group that is providing a significant amount of growth capital for the medical community.  

That's like a bar owner not catering to anyone under fifty.  Or a preschool taking only kids five and up.

[Margm]

It just didn't seem right to me on so many  counts.  First, since we have to have Medicare, it would seem against the law.  After reading that, I began to think of my Medicare (which I pay for) as similar to welfare.  I am not the brightest bulb on the string, but it just seemed wrong in all ways.  That has been at least 5-10 years ago that I read that and I really started hating my Medicare.  This "bright bulb" waited two years (which was probably not legal) to get Billy's Medicare (he worked 37 years for state government and never paid into SS).  Anyhow, my "saving the government money cost me $10 for each year I had not signed him up ($20) more a month for his Medicare.  I complained about Medicare paying so little to my cousin who has two son's that are doctors, and herself a PhD, and she said it was not welfare at all, we buy it and have paid for it.  Like I said, that part of the string of bulbs is a little brighter than me.  But, we have always had our Blue Cross as the secondary insurance from our group retirement, never changed.  Still, his chemo was going to be so high that all of our insurance would not cover it.  I said I didn't care what it cost he was to have the best they could give him.  Then she called me into the office and said we qualified for the chemo drug company to pay the difference.  Bless his heart, he did not live long enough to break their bank.

[Margm]

I got in little Ferris-Yaris today and I rode about 150 miles through the south parish countryside into other parish.  I went by myself.  I was not scared.  But, I had taken a Xanax that morning.  Next week I will try to go to the northern part of the parish into the other parish that made me so scared.  I was in Billy's family's country today, I will be in my childhood country next time.  I'll see if that makes a difference.  Went through little towns with friendly names.  Close to where Bonnie and Clyde were killed.  But the best thing is I got out by myself and did what I couldn't do, that I love to do.  One step forward and I breathed and talked to Billy.  

[MartyT]

Good for you, Marg! 

[Margm]

I don't keep a blog, but I used to.  After Billy left, there is no way I can go back and read what I wrote after losing him.  The scar tissue falls off the wound if I do that.  These are just word salads that I write on here most times.  Read if you want to.  Nothing written in concrete, just my musing this morning.  Also, a little pat on my back for myself.  I speak of women, but men go through this too.  I still think of myself as a woman, even though sometimes sweatshirts fix things where I don't have to wear a bra, damnable female strait jackets.

 “We should not judge people by their peak of excellence; but by the distance they have traveled from the point where they started.” ― Henry Ward Beecher

When I was a little girl I would ask Mama to lets go riding. She would get the keys and take me to Hodges Grocery (down the street) and then come home. She had a lot of her daddy in her, that was a big joke to her, a disappointment to me. But, I learned a long time before that "children are to be seen, not heard." Not a bad or mean lesson. But, oh sometimes, sometimes in the summer she would take me up on Spring Branch Road, not far from the house, and we would fish off those wooden bridges over the little creeks/streams that were really across the AR line. I even enjoyed going to my grandparents out in the country. Just going. Billy tapped into my "going" bug and he would take me, or he would go fishing and I would ride by myself. I had nowhere to go. Just go. 

I bought Ferris-Yaris that gets up to 39 mpg for the distinct purpose of "just go." For my kind of "going" I was not sure the little truck would last. I took my first trip up to Shongaloo. I kept having a frightened feeling, could not tell why. I turned toward Springhill and turned left on Wise Road. Across the highway was Haynes Road. I was "home." But I wasn't. I was in terror that I could not understand and made it back to the apartment. This was a new problem that I had to overcome. Yesterday, I could not get Scott on the phone so I drove to Sibley to check on him. (He was okay, he just either does not plug his phone in or sometimes he loses it, or sometimes turns it off). That's Scott. I decided to try my "just go" feeling. Scott offered to go with me, he is a good son. I had to do it by myself. I rode through Sibley, which by the way, Billy's essence is not there. I feel that even he would not feel it. 

I drove toward Ringgold. I cannot tell you how many miles I put on Ferris-Yaris, but he performed beautifully all the way through Fryburg, Sailes, Jamestown, Castor, Bienville, Bryceland, road to Mt.. Lebanon, Gibsland, back to I-20, then to the apartment. No fear, no terror. A lot of "what if's" and "I wish we had lived here on retirement" and a lot of "wish I could start all over again's." But I cannot. You have to accept things as they are. 

One terror down, a few more to overtake. I am not special. Other women have to face losing a mate. We handle it the best we can at the time it happens. All of us in our own way.