Busy day for me at the VA tommorow, finally here

Just wanted you to know I am thinking of you. Stay strong my friend and fight right! Kick some arse if you have to!

I have to say, for them to have you sign a pain management agreement feels like a slap in the face. I am upset they made you do that! I feel that when you have incurable cancer for you-know-what's sake don't worry about addiction and the rest of the crap that goes with pain med usage! Keep the patient comfortable as possible with the best quality of life possible!!

THEY should sign one... that starts out.... We the medical providers of a patient who desperately wants to live out the remainder of their lives comfortably, herby promise to advocate for and assist said patient in every way humanly possible. We will not be late filling medications needed, we will not treat the patient like a drug seeker, we will not bully and shame the patient in any way, we will not spring drug tests that take a week to process on the day you are out of medicine and then refuse to fill your medicine until results are back... . We promise to not bullcrap the patient or treat them in any manner other than with utmost respect and kindness, and we will assist in any way possible dealing with any issues in a very timely manner....... an on and on and on......

I think THE PATIENTS need to make a pain management (and cancer or other long term illness) contract that the providers need to sign and abide by...

kuku - as an oncologist, he already has more leeway than most drug prescribers could ever hope for. This wasn't his idea, it's a new policy of Gibbs, because of the Fed's tightening up even more on the use of long term opiates. I have no problem with it, I have nothing to hide, and everything to lose if I screw it up. I am forced to drive a 70 plus mile trip one a month to pick up scripts in person. We can't afford to have one lost in the mail, they wish there was a better way. And with the Norco and the Fentanyl scripts, they can no longer be faxed to CVS or the other drug stores. But one with chronic pain issues, does what one has to do. I can not afford to be without, not even a single day.

I agree with your sentiments about how it should be, and believe most chronic pain sufferers would gladly agree with you. It's all the prescription mills, and drug abusers, that have ruined things for the legitimate chronic pain patients. Of course, its not fair, and it puts a burden on all of us. But life without our meds would be even more unbearable than it is with them. No choice but to go along with all the red tape and hoops and circles. It is what it is.

There are many outside of "our" world that simply don't get it. I have been on these types of med, steady, since July of 2010. During that time, there has not been a single moment awake, that I was not suffering through some serious level of pain. At no times, do these meds eliminate the pain, meaning, even with the meds, I still suffer high levels of pain, but bearable (most times). That are not designed for total relief. The only relief I get is when I am in a deep sleep, and that doesn't happen often enough. But as soon as I am awake, the pain is there to greet me in the new day, and that its with me for the next 18-20 hours until I am asleep again.

I nap every day, I have to, no longer an option or a luxury. My physical endurance on a good day is still in the 4-5 hour range. Sometimes due to necessity, I will push it to 6-7 hours, but if so, I will have to pay for it all the next day. Trouble with napping, its takes me at least an hour to relax enough for sleep to be possible. Most days, I am hurting too bad to relax enough to sleep. So a lot of my naps is simply laying down in bed watching a movie, hoping and praying to relax enough to stay off my feet.

Today, being so wiped out still from yesterday's day in Columbia, I napped for 3 hours. I believe I was sleeping most of the 3rd hour. However, upon getting up, the fatigue hit me between the eyes like a sledge hammer. All evening, I have crawling, and doing mind over matter, just to do simple household tasks. I refuse to give in or give up. The easiest thing to do, would for me to just lay around and do nothing most of the time. That is what my body wants out of me, but my mind refuses to give in, so I push and push till I drop some days. Probably not a good game plan, but just how I am in r/l.

I still see life as worth living, even though the quality part sucks most days. The alternative is to give up hope and lay down and die, but again, that's not how I operate.

The two things that really keep me going, when nothing else works, is quite simple. My love for my wife of nearly 41 years (April 6th), and my Catholic faith. If it weren't for those two elements in my life, not sure I would be so brave or tough, but through both of them, I feel I have a reason to be here in this world, and at least have some relevance left. For a while there, I was beginning to feel like the invisible man. Went from having some importance and value in the business world, then had to sit back and watch it all snatched away from me due to my endless and major health issues. That was a tough nut to swallow, some days, it still bothers me. This is why I write about sitting in legal meetings, etc. Don't get paid of it anymore, but least makes me feel my experiences and skills from the past still have some meaning. We all do what we have to do to survive, this is my way.

David

David,
Most of us are walking through this "illness" journey, your appear to be steaming through at full throttle, in a constant war. You are amazing with all you have been through and like others have said, your attitude is inspiring. Please know that many, many others who do not post are thinking about your situation and hopefully praying for you, I believe there is great power through prayer. So just keep the Faith, stay strong, we are looking for a good report for your future treatment plan!
Dan in So Cal

Thank you, sincerely.

Having a miserable day in the flesh today, barely functional, but earlier, dwelling on my faith, brought me to tears, not of despair, but of joy, as one day, all tears will be wiped away, and all suffering in the flesh will end. I truly believe this.

I believe all this has been for a reason, use to think I was being punished, but no longer believe that, now I feel that suffering has a divine purpose. The flesh is weak and infirmed, but the mind and spirit is still strong.

Take care and hang in there, David.

David,

You inspire me each and every day. Praying each and every day you get closer to your complete wellness. You're a very strong man and a fighter for sure.

Take care and as always, praying for you.

Dave

I hope you can get some rest over the weekend. You've been through a lot this week.

Still praying for you,
Andrew

FRIDAY EVENING UPDATE - NOT A GOOD DAY FOR NEWS :(

While shopping at Home Depot, got a call from my VA nurse. First part threw me for a loop. She said that based on their most recent blood work, my liver function and kidney function numbers were off the charts. Said my doctor considered it very serious. They are bringing me in next week, not only to re-test, but to run higher level tests. And they are setting up an urgent ultra sound of both parts, asap, at the Greenville VA clinic. Least I won't have to make the trip so soon again to Columbia. This took me by total surprise to be honest, as if I need new and potentially serious problems.

I asked if they had gotten the CAT and MRI results in from Tuesday. Yes. Can you please tell me? Silence on the phone for about 30 seconds. I'm sorry, but they are marked: Must be discussed between patient and doctor in person. I tried again, can you at least tell me if they were clear? Sorry, not allowed to disclose findings. Will have to wait till you come in to see the doctor.

Talk about having swords hanging over my head. Usually on scans, if they are clear, patients typically told even by phone, no major issues, or the all clear signal.

Not schedule to see the Doc until the 23rd, unless these new problems areas gets me in to see him before that appointment.

The fun goes on and on.

And on a side note, despite our best legal efforts in court this morning, and with a very emotional and compelling victim statement by my ex-boss, the paroled felon parole-breaking slime bag that we were hoping to return to prison only got a minor slap in the wrist. Instead of the hard as* judge that we met with 2 weeks ago, this scum bag drew the luck of a very weak minded and liberal judge. We were astounded by the outcome. This same person didn't even show up at the previous hearing, and there was an active arrest warrant in play for his arrest that was never served. Something not right about our justice system here in SC. Talking about a guy that I proved embezzled 250K in 2008, and we got a 10 year sentence at the time, but he only served less than a third of it. He's also the prime suspect for another missing 4 million, actually only suspect.  Since being on parole, this was already his 2nd violation, and he's still walking the streets. Sorry, rant over. Not a good day folks.

Post Edited (Purgatory) : 3/6/2015 5:46:18 PM (GMT-7)

David,
This sounds very serious.
I hope your wife goes with you.

Sending positive thoughts.

David -

Very concerning news, to be sure. Especially when the nurse reports that the doctor " ...considered it very serious." The only thing I can think to say right now is that if anyone has the strength and courage to meet with the doctor, and hear these test results, even if they are not good, then that person has to be you.

But there is something else I can add. A couple of times in the past on other threads I have mentioned something I once heard on a Muscular Dystrophy Telethon, when a research scientist likened a recent MD gene discovery to a person who has been in a pitch black room, fist-fighting with an opponent who can see him, but he can't see the opponent. So the opponent has been landing every blow, while the person has been swinging wildly in the dark, striking the opponent only occasionally. But then the scientist said that this discovery was as if the light in the room had suddenly been turned on, and now the person could see his opponent very clearly, and now could land every blow against him right on target!

Perhaps it would help to think of your upcoming appointment with the doctor in this way, that, even if the news is not good, at least this may be the turning point in your journey, or the start of it, where you will finally be learning what it is that has really been bothering you all this time. That is, the light in the room is finally being turned on, and your opponent is now right there in front of you, no longer hiding in the dark, and treatments for you can now become very specific and very relevant.

I sincerely hope that the news turns out to be better than it now looks. But whatever it is, it's a given that you will handle it, to continue the fist-fighting analogy, like a champ.

Good luck, and of course let us know how it all turns out.

David - extra prayers for you this week.

Andrew

thank you, Andrews, and jane - welcome to you