I opened and read your post even though I represent nothing you were asking for. When I was finished reading through the other posts on other topics I came back to this and read all the posts. Bear with me, I am heade somewhere specific with this. Thanks to CF I recieved a pre-natal vasectomy, so I do not have children per se. But I finally got around to reading the great posts from some very spectacular people. Printer has me pegged. Years of school demonstrated the hard math was answering the story problems, or elswhere an essay question. I have learned the most from people's stories, and I am a sucker for a good one. I have a lifetime of stories having taken life in like my mouth over a fire hose. It is also an examined life. Saveferris2009 echoed your eschewing enablement. This a damned hard one, something I failed at time after time.
I have what has finally crept into CF vernacular; pancreatic cystic fibrosis. I was given a pancreatic function test by Dr. Steven Freedman, a familiar name and deserving of more than could be written. Any CFer with GI/Pancreatic symptoms especially CF related needs to see him. The (then) idiopathic pancreatitis was severe and at his suggestion had a sweat test. I am now 62, and having re-read some of his correspondence, I was diagnosed in summer 2001 when I was 51. I am near end stage pancreopathy and in outrageous pain without my narcotic analgesics. I have had a dozen kidney stones of note and I didn't think it possible to be in such pain and remain conscious. I periodically had what I now know were pancreatic and gall bladder attacks from birth I amagine, but always the Doctor would treat the pain and shake his head. I am fairly sure my father also had CF, by the age of 10 he and I were on proportional doses of the 1960 version of treatment. I attribute this in part to CF but I redefined ADHD and though my first few year heport cards, Like Sally all D-'s. The hyperactivity part was standard but on a different scale but the attention deficit was more selective attention with photographic recall until my late 20's when I had masked the hyperactivity and my attentions had broadened, were less memorable and more normal.
I made a post yesterday under the topic "New Member" where maybe from reading your post first, I dipped my pen into the ink of ending one's life. Please read it, I see no value repeating it here. Just to set the stage, I channeled my energy and a gift my parents gave me, into learning. Shortly after I graduated high school, I received my doctorate in genetics. I attended university more for the social interaction although I was pursuing an engineering degree. My doctorate was not known outside of the faculty.
Anyway, my girlfriend was the pre-eminent poster child for the social sciences, contrasting me as the empiricist of the hard sciences. In 1968, intellectual debates were about euthanasia and eugenics, etc. Jane and I were sitting in the student union, discussing navel lint. What started off as my personal sophistry against euthanasia, I was spewing as she sat quetly analyzing my every word. Jane was a good public speaker but hives always betrayed her real fright. She would wear high collar blouses because they would creep up her neck and if it went on long enough, her face was red as a beet. Something I said had hit a button and as she sat, ignoring red bumps that ultimately fit with the rage that beset me when I finally shut up. Her father had died from MS when she was an adolescent. Not the lucky MS, but the worst possible. Her father, an insurance salesman, had quickly gone through the family nest egg just finding out why his foot was dropping when he walked. It wasn't long before the family drove across the state to a VA hospital to remove that foot. Then the leg below the knee. He died on the operating table during the fifth amputation.
She told me in no uncertain terms that I had no idea what I was talking about, and proceded to tell me autobiographically, the story from an errant foot through two medical scams and vacations spent walking the grounds of the mostly nursing home VA Hospital. She admitted to seriously considering the most gentle way to kill her father.
I asked if her father ever gave up, and the hard answer was yes. He had set in the living room day and night with a leg festering with gas gangrene when her mother arranged his final surgery. She felt that even if life ends blinking to nothing, it was preferable to his suffering. I asked to explain just what suffering she had seen. She told me, and to my continued astonishment, she saw his self esteem as the family breadwinner, remember this was maybe 1958 on, father, husband, all that defined him had been most cruelly taken while his loving family could do little more than keeep the flys away. I think that sort of sums up how your 23 year old feels as well as you and others who love him.
My sister was seven years younger than me. I was 20 when my father died from malnutrition, leaving me with my mother, 13 year old sister and older brother who was busy building his own nest, thank you. A reunited friend recently described my sister as being like Nellie from Little House on the Prairie. Missy was an incorrigible brat, which was costly in our diciplined house. Missy was in the throws of mental illness, for sure an inherritable disease. She was severely bipolar I or as a professor of psychaiatry who has severe bipolar I, prefers, severe maic depressive disorder. It was a disease that suffered the whole family, just as CF does. My wife and I propped her and her children up for her entire life. I was my sisters keeper. Few ilnesses are as costly in terms of everything. Sadly, very sadly, her disease was degenerative and she died at 52, leaving us with her ten year old daughter. It was a medical overdose.
The best advice has already been given. I can only relate to his life of physical pain. Ok, I understand quite a bit about giving up, or in my case not giving up. If life is not worth living, make it worth living. When I was finally diagnosed, my doctors stopped handing pain medications out with tweezers, counselled me on my accepting narcotic addiction as a fact of life, and on went the patches and the pain was gone, more or less. I believe firmly that severe chronic pain should be treated adequately. At this point, there is nothing to lose and maybe the beginning of a return to the living, not joining the dying. Pain is a jealous mistress and if you let her, she will rob you until nothing is left. A visit to Dr. Freedman is in order, he is a leading pancreatic/GI specialist if not the best. And certainly he is peerless with CF pancreatic patients. Dr. Freedman is a healer foremost and just to be in his consult, you feel better if for no other reason than he knows and validates you as a whole person. Dr. Freedman knows the importance of attitude is toward how well or sick you are. Considering the hole your son is in, it is patently obvious he is severely depressed. A pancreatic specialist can only do so much. If you are the right person to do this, fine, if not find the right person to explain that despite how discouraged he is, his life has value for himself and certainly to those who love him and it is time to see a specialist about his depression. Treating this first may not be the answer. But mixed in here are the actionable steps to raise him back to understanding, things can be done to make you better in the form of proactive pain management, revisiting his health issues with Dr. Freedman or the like. Printer may know the other dozen or so doctors skilled to constructively readdress what can be done to improve his quality of life. And still the issue of depression has to be properly addressed. Maybe he should join this forum. Nobody can feel his pain, or so he thinks. Thirteen thousand six hundred eighty two patients with CF or family and friends of those with CF are hanging in the wings and somebody, likely a chorus of people who have been in his dark spot.
That debate on euthanasia Jane and I started to have, continued with some added ground rules. I have lived my life exactly as I promoted my arguement. The better part of my 62 years has dealt with intractable, and by decision, untreatable pain. This gets boring fast. I have gone to lengths to keep driven to distraction from my pain. The advice for him to get of his butt and do something with his life is perfect. How did you keep your son from crying as a baby, distraction was a big tool in the bag. Can he take online classes? If he can do any work at all, put him behind a soup line, in other words introduce him to the world of volunteerism. My wife and I were worker bee founders of a "Social Club for Chronic Mentally Ill Adults" for 25 years. I could have contributed more, but I had two tasks, driving and socializing, or as we were taught to provide normallizing activity and stimulous for our members. It is humbling and gratifying to pick up a station wagon load of adult schizophrenics and chat about whatever as we motor to the church.
I now have Parkinson's added to my troubles, in fact within weeks of my diagnosis of CF I was diagnosed with Parkinson's. Judging from the systematic removal of your son's colon, I guess he has developed megacolon or some other paralytic bowel issue. Constipation is about as funny as gout. The difference is constipation can kill a person just as dead as a heart attack will. Dr. Freedman and his team, whether by accident or design have become the North American leading specialist and what he can't do himself, others equally talented are right there. Parkinson's disease wrecks havoc on the bowels and so does the medicine to treat it. CF is more or less ditto when it comes to the bowels, for that matter everything from the lips down is affected by CF to one degree or another.
Finally I would send your son on a scavenger hunt. The real reason pharmaceuticals have jumped faster than gasoline in price is they all are or have re-tooled for genetically based drugs. For the first time in history, a medical frontier has broken trail. A major trail is one of the first gentic diseases located, decoded and biochemically understood. We have more than one working genetically based drugs that in a limited few resolves their symptoms to some degree. This newly blazed trail is being followed up with a super highway. We are at the cataract, the top of the watershed. Your son has a greater chance of living a full life than ever before. There is somebody looking for your son in a promising drug trial. Send him to find it.
My heart goes out to you and it is breaking mine as I contemplate his depth of pain, and your spirit at bay. If you are still into it, take a look at this current forum, it is either the last post or near to it under "New Member" There is more food for thought.
