Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 I am so very sorry that the health care program that you are in has left you feeling at a complete loss. I have been a health care provider for a very long time and have been; unfortunately, a patient as well. I have said this time and time again. When you, as a patient, go to a health care provider, you are the CUSTOMER. You are paying for a service and deserve to be respected as any other customer in any other organization would be. You should not have to prove you are ill enough, you should not have to feel that you can not be treated until you have reached the point of being unbearable or risking your entire well being. Granted we do have to watch out for individuals who may be presenting with drug seeking behavior; but in all honestly that is extremely rare as most drugs can be bought on the street or even by email now. We are cautious about individuals who may be easily addicted, but I had already explained that and we know how and when to treat. You seem to have a lot of trouble with your current physician. The fact that you feel the need to delay care, or begging for it; would certainly indicate that you need to find a new physician. I, again, strongly suggest that you tell that doc to do the job you have paid for or you will go elsewhere. You dont have to be ugly about it. I strongly feel that you have so much pent up frustration with that doc that you may never feel comfortable enough around him/her to be completely honest; and without honesty there is no way you can be treated, medically, appropriately. Just my opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Dear Scot, There were several things you said in your post that really disturbed me. All I can say is that I would hope that you would listen to my interpretation of my own story in this regard, and perhaps reconsider some of your decisions. Scot wrote: >Oh well. I'm sure their are dozens on this list who are suffering far greater than I. Pain can be an adventure. I'm going to go as long as I can. I have had at least a dozen acute attacks this year and only once did I go to the ER. I'm one tough S.O.B. when I want to be. And... I like pain more than begging 4 times a month.< I felt this way also, and toughed out at least eight or more acute attacks, and never went to the ER. Being this tough hurt me in the end, because I had no way to substanciate the increased damage and resulting increase in pain. Because there was no documentation of the attacks and the pain, my doctor didn't believe me when I told him I needed higher pain medication. Consequently, SSDI didn't believe me, either. You do yourself no favors by " toughing it out " . > I intend to tough it out until my diabetes gets tough to control, my weight drops significantly, or my rest is so disrupted that I am making myself worse.> I toughed it out, then had significant weight loss, which ended up being onset of diabetes. My doctor didn't believe that could be happening so soon and wouldn't test me, then either failed to believe me when I told him my symptoms (blurred vision, excessive thirst, frequent urination) or was just guilty of medical ignorance. It resulted into my going into diabetic ketoacidosis shock, almost into a coma, and a physically precarious vacation in Intensive Care. You don't want that to happen to you, Scot, it was a horrible experience. > Current medical thinking suggests if my pancreas dies off a little more, I may experience less pain soon anyway.<< My personal experience here again. My DKA resulted in pancreas burn out, and then the development of type 1 brittle diabetes. It's happened, but the cessation in pain doesn't happen, as long as you have pseudocysts. I had a cessation in pain for a few months, was off all the pain meds and able to eat whatever I wanted, it was quite uplifting......until the pseudocysts reared their ugly heads again. As long as there are still pseudocysts in the pancreas, they cause continual debilitating pain. That expected loss of pain doesn't happen. I've been in more pain in the last three weeks than EVER before because of these pseudocysts. The pancreas is non-functional, but the pseudocysts aren't. >But I have decided to tell any physicians in the future nothing more than " I quit in 1994 " and no more. I am going to revise my HIPPA paperwork at My primary physicians office, GI doctors office, and at my favorite Hospital to reflect my desire to not have my medical records given to any doctor without my consent. I am starting to understand that any mention of " slips " has dire consequences.<< I can understand your reasoning behind this, Scot, and understand why you would chose to do this. But please think about my comments to your other statements. I would hate to have you go through what I've been through and to have to suffer through the damage that those choices could bring. Because what happened to me very much by circumstances that almost duplicate what you're saying you plan to do, I know what CAN happen. My life right now bears no resemblence to the life I had three years ago, and I greatly miss the days that were. There is nothing I can do about it now, but you can. You are too young and have too many positive experiences ahead of you to deliberately choose that road. With hope and prayers, Heidi Heidi H. Griffeth South Carolina SC & SE Regional Rep. PAI, Intl. Note: All comments or advice are personal opinion only, and should not be substituted for professional medical consultation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Scot, I know there are serious life responsibilities and money is a big factor but I have been through just barely being able to remain employed whilst I was sick and in the end you have to realize living is more valuable than dying to pay bills. The only chance you have of earning money is healthy. So take care of yourself first and foremost. Killing yourself to live just isn't worth it. So, don't feel bad spending so much on health care, your life is surely worth it. Good luck and blessings, Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Thanks Deanna and Heidi. I have made an appointment to return to my GI's office. The earliest available appointment was Monday afternoon the 24th. I am keeping a diary of my pain for the 6 days I am without pain meds. I have actually learned quite a bit about my pain so far. The enzymes do not seem to be helping after meals, but they may lesson the burning pain between meals. After meals, there is no noticeable difference. I believe I could do without pain meds in the morning and after breakfast and lunch provided I eat no fat and keep the meals VERY small. There is no way I can even eat 1/4th of what I used to eat with pain meds without having serious pain that would definitely require meds. So I intend to tell him that. By 4:00 each day the pain is pretty bad and unbearable after I eat dinner. I would need two of what he was giving me after dinner to avoid unbearable high stomach pain and back pain every night. I also wake up every night with severe back pain at 1:00 in the morning. I wake up barely able to breath and I spend from about 1:00 to about 3:00 or 4:00 in severe back pain. I consider the emergency room every night for at least an hour and a half. This will require pain meds. So I will ask him for 4 of what he was giving me per day or 2 if he can up the dose. That would be 2 per day/QTY 30 and that would last me 15 days. I will ask for QTY 60 in that case to avoid undue co-pay charges. This is going to be bottom line for me. I am not going to accept less without changing doctors. I will be honest and respectful. I am now tempted to eat only a small breakfast and no other meals until I see him. But I will continue to eat 3 meals a day and try different foods to cover all the bases. This has been a horrible experience. I AM Suffering. But now I have the conviction to do what I need to do. It is going to be a Long Friday and a LOOOOOOONG weekend. Long story short – I have no regrets going through 30 pills in 8 days. That is just exactly what I require – and funny thing… That is exactly the way I was taking them. Me and the GI are going to have to come to an agreement. I have no choice. Thanks to everyone for the support (you too Bert). I have the knowledge and confidence to confront the Doctor. Scot --- persiankat555 wrote: > Dear Scot, > I see so many emotions in your post. > SNIP < > Compassionately, > Deanna > > > <hhessgriffeth@h...> wrote: > > Dear Scot, > > > > There were several things you said in your post > that really > > disturbed me. ===== I'm feeling old today, Sherman... Set the Wayback Machine..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2003 Report Share Posted November 23, 2003 Scot, I am so sorry you are having so much pain and nausea/vomiting lately. I hope you get some relief soon. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
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