Saturday, October 20, 2012

LIVING WITH CHRONIC PAIN: 10/20/12

LIVING WITH CHRONIC PAIN
  As the year 2003 was drawing to a close, I was celebrating 34 years as a member of the Screen Actor's Guild, (my first paid job as a "professional actor" was in 1969, when I was cast to play the next door neighbor on the Diahanne Carroll TV series, "JULIA". ) ( my 'daughter' on the show was played by a six year old Jodi Foster)
  I was also celebrating almost 15 years of full-time employment in the Motion Picture / Television industry. 
  After my stint on the "Julia" show, the work didn't exactly come pouring in, so I worked a variety of jobs over the years to support myself and my family, with every spare moment spent going to Hollywood. Some times for actual auditions, and sometimes just to sneak into the studios and walk around all day going from sound stage to sound stage to watch the movies and TV shows being made. 
  When I say a "variety" of jobs...
Over the years I worked as a bartender (did that a lot) tow truck driver, ride operator at Disneyland, shoe salesman, car salesman (you get the picture, I had a LOT of jobs)
  I never quite got to be the next Burt Reynolds, but in 1989 I changed my focus a bit, when I found out I "could" work EVERY DAY in the movies as an "Extra" or "Background Artist". An "Extra" is one of the people you see in every movie or TV show..the guy walking, or driving down the street; the person sitting in a restraunt, on a bus, watching a baseball game; EVERY person you see on the screen, is paid to be there. As a member of SAG, I was paid the higher Union rate of $125.00 a day, as opposed to the Non-Union rate of $58.00 a day. And there was work EVERY day. It might be on a different movie or TV show every day, but there was a ton of work. 
  I continued to audition for "real" acting jobs, and I would land a nice part now & then in a film, TV show or commercial. Although, as I said, I never quite got to be the big star I had dreamed of all my life, but I "was" working in show business, and making a very good living. 
  The $125.00 a day was the "base rate", whether you worked only one hour, (I had several days like that) or if you worked 8 hours. However, the movie business is NOT an 8 hour a day job. They were usually 12 to 16 hours a day, and that meant OVERTIME pay!  There is also something called "Golden Time". That's when you work PAST 16 hours. Once you pass 16, every hour after that pays your full day rate per hour!!  And believe me, movies & TV shows are on such a tight schedule, they will work as many hours a day that it takes to get what they need. 
  After the first couple of years doing Extra work, I was also getting hired a lot to be the "Extra's Coordinator" on many different shoots. The "Coordinator" is responsible for every extra on the set. Getting them signed in, sending them to hair, make-up or wardrobe, and sending which extras to the set that were needed for a particular scene. This job paid even more. The base rate was $200.00 a day, and sometimes even more. That was a fun job, and could be quite a handful on shows that were using 100's and sometime 1,000's of extras a day. 
  I met, and got to work with some of the biggest stars in the business, and got a LOT of work as a "Stand-In", "Photo Double" or "Stunt Double". (Pretty self-explanatory jobs, a "Stand-In", STANDS IN for the actor while they adjust the lighting and camera angles; a "Photo Double" actually works on camera replacing the actor in long distant shots where you really can't see their face, and a "Stunt Double" is the one who does all the stunts that might be too dangerous for the actor. And every job has a higher pay rate. 
  There were also many days where I would go to work as an extra, and suddenly the director would decide that the scene needed more dialogue. When you are given a "line" to speak on camera, you are immediately bumped up to an actor's contract for the day, taking your pay rate to $775.00 a day. 
  I was fortunate enough to work as a Stand-In, Photo Double & Stunt Double for RICHARD CRENNA, for over 10 years, JACK PALANCE, for 8 years, ROBERT CULP, JAMES GARNER, and many others. I had some great acting jobs in a number of movies and TV shows. I covered all this history to basically let you know that I was HAPPY. I was in the business I loved, and was making a very good living. I was NEVER going to quit!  The great thing about being an extra, is that you can work as long as you want, no matter how old you are, there is ALWAYS work. 
  So, 2003 is coming to an end. Everything was looking great for the coming year. I wasn't a young man, but at 59, I was in great shape. A slim, trim 165 pounds, at 6'2", I was always on the go. Walking or running up to 8 miles a day. I had never had any health issues my whole life. But..something was wrong!  2004 had barely started, and I began to have stomach pains. Occasionally at first, then, more and more frequent, and becoming so painful, I began to miss work. Now, understand, I loved my work SO much, and it wasn't hard, physical labor, I was able to get up and work thru colds, flu and any other icky, sicky days. But THIS was different!  The pain became so intense and severe, I couldn't walk. I could barely breath it hurt so bad. 
  And thus started a 2 year odyssey to find out WHAT was wrong!

   The Screen Actor's Guild has a great insurance plan. As long as you are working. When you stop working, you have no insurance. 
I was in crippling pain. Absolute agony. I was able to collect State Disability for a while, but it paid practically nothing. And then began the trips to various hospital Emergency Rooms. 24 trips in 18
months. 12 different admissions. Test after test after test, only to be told repeatedly that could find nothing wrong, just a lot of backed
up stool and constipation. I spent weeks at a time in one hospital after another. X-rays, cat scans, endoscopies, colonoscopies. Horrible scans that required barium enemas..and always being told the same thing. "We can't find anything wrong".  Every different doctor, at every different hospital had a different plan of attack. And all the while, the pain kept getting worse. 
  I had applied for Social Security Disability and Medi-Cal, only to be denied repeatedly. (That's when I found out that, at least in Calif, every single application for SSD or Medi-Cal is AUTOMATICALLY denied as a matter of "policy".) if you WANT, and/or NEED SSD or Medi-Cal you have to keep applying, over and over and over. Eventually requiring the services of a Disability Lawyer, at which time they actually start looking at your case. 
  I heard horror stories of extremely sick people, suffering from all kinds of disabling afflictions, that actually died while fighting to get coverage. (There is a program here in Orange County called M.S.I.  "Medical Services for the Indigent", during one of my first hospital admissions, a Social Worker Representative, signed me up for it. It's like a "temporary" Medi-Cal that you have to keep getting approved and renewed every 90 days while waiting on SSD & Medi-Cal. It pays only pennies on the dollar, but hospitals and Doctors have to accept it)
   One hospital suggested exploratory surgery, to see if they could "find" anything. (It was at that hospital where the surgeon stopped by my room and actually said "I don't do surgery for people with MSI, and walked out. 
  Another Dr, at another hospital, thought I was faking and just wanted drugs, so to "teach me a lesson" he ordered 12 enemas in
one day!!
  By now I was literally bed-ridden. Unable to stand up straight, or walk. By the sheer Grace of God, and a wonderful representative of MSI, who took notice of my condition, and lack of results, I was sent to see a Gastroentology Specialist in Irvine. Within 5 minutes of examining me and looking at my medical records, he rushed me in to emergency surgery!
  I had a tiny twist in my upper intestine that was preventing stool from passing. It was so high up that enemas were of no use, and laxitives couldn't push the stool through. I had what is called a "Total Colectomy", removing my
colon and SEVERAL feet of intestine. The stool inside me had started to rot and was poisoning my insides
 He said if I hadn't had the surgery RIGHT THEN, I would have been dead in 3 days!!  He was furious! That "little twist" in my intestine had been noted by the very first Doctor at the very first hospital I was admitted to. A very simple little surgery, way back at the beginning of this nightmare, could have removed that twist, and none of what I had been through would have happened!!
  It was now April, 2006. This Doctor said he didn't care if I had Medi-Cal, Medi-Care, MSI or no insurance at all. He operated on those that needed it regardless. 
  Well, you might think we are coming to the happy ending to this horrific story, unfortunately that is not the case. So lets start with the surgery that saved my life, and move forward. 
  It was a MAJOR, MAJOR surgery. 
12 hours plus. They have me put back together and are preparing to send me to recovery. (I had discovered, way back when this all started, that I am allergic to the pain medication, Dilaudid. I had a big red "ALLERGIC TO"  wrist band  on that provided that information. The nurse who was getting ready to move me to recovery happened to over look my wrist band, and gave me a shot of Dilaudid to ease the pain for the trip upstairs. 
  By the time we got from 1st floor surgery, to 4th floor recovery, my body reacted to the medication. 
My heart stopped, and my wife said my entire head had shrunk to the size of a baseball. The Dr walked in, I was told later, and said "What the Hell is this? This isn't David Garrison the man I just operated on!" While establishing that it was, in fact, ME, the emergency code was sounded, and they began working to bring me back. He turned to my wife and asked "Is he on ANY drugs I don't know about?" She assured him no, and reiterated my allergy to the specific pain med. He grabbed the nurse who had brought me upstairs, asked her what she had given me, and then, apparently all Hell broke loose. I was pumped full of NARCAN, which flushes ALL drugs from the system. I mean ALL drugs. All pain Meds, all sleep aids, EVERYTHING! Suddenly I was back. Wide awake and could feel everything!!  I was back, but fading fast. They quickly discovered that all of the staples used during the surgery had come loose and I was bleeding to death internally. 
BACK into surgery we went. Reopening my stomach and working as fast as they could to close everything back up. The trauma to my system was too much, and my heart stopped again. And once again I was brought back. 
  I awoke 5 days later to discover I had been on full life support for almost a week, and in intensive care for another week. There were tubes and IV's it seemed attached to every inch of my body. Luckily, the Dr had done an "Intestinal Resectioning", so there was need for one of those awful colostomy bags. 
  Eventually, after another five days, I went home. My Social Security Disability had been approved (even tho it took a lawyer to finally get it) my Medi-Cal was now in effect, it seemed all I had to do now was heal. 
  Oh no, that wasn't how this tale was going to turn out. One nightmare was over, but ANOTHER
nightmare was just getting started!!

   MORE HORRORS AHEAD....

   Because of the enormity, and severity of the surgeries, I assumed the terrible pain I was suffering was just something I would feel until I was fully healed, and it wasn't until my stomach begin to obviously, physically begin to actually start twisting until I had a huge,  lop-sided looking bulge on one side of my abdomen. A check up with the abdominal specialist, and all new X-rays revealed that I had, as a result of the surgery, developed several "Intestinal Adhesions", (or "Surgical Hernias") there were 9
in my stomach, almost in a perfect circle, and 2 in my groin, one on each side. More surgery. Fortunately, the 9 in my abdominal area were able to be repaired "Endoscopically", which is basically a "tube" inserted into each one, with the ability to repair and cover with mesh. This flattened and straightened my stomach back to looking some what normal again. Not so lucky with the groin hernias. Because of the "after surgery & healing" pain, they could only do one side at a time, giving the repaired side time to heal before operating on the other side. The healing & recovery from Endoscopic surgery is almost pain free. The groin hernias? Oh, not a chance!  Unable to roll over in bed, and walking VERY slowly helped some what, but that tool what seemed like an eternity to stop hurting. And JUST when I could cough or sneeze without screaming in absolute agony, they repaired the other side. 
  After what seemed like more than enough time had passed for my stomach to have healed and finally stop hurting, the Doctors begin to get concerned when I kept telling them how bad the pain in my stomach was, STILL. More X-rays and another Endoscopy. (An Endoscopy is a fairly simple test, where a "cable" with a tiny camera attached to the end, is inserted through the throat, and fed down into the stomach allowing them to see exactly what is going on down there. A "Colonoscopy" is a cable with a camera attached that is inserted into the rectum through the anal opening, and allows them to see everything from the other end). Although the Surgical Hernias had been repaired, I had now developed massive amounts of internal scar tissue. Since no one has yet developed a surgical procedure that can remove scar tissue successfully, and not create more scar tissue, it becomes a condition that can not be fixed or repaired. Internal scar tissue causes extreme pain and discomfort because it is not flexible and does not allow the internal stomach muscles and tissue room to, or the ability to, stretch and move freely as they would normally during your day-to-day activities like walking, bending, sitting etc. On the outside, your stomach appears to have
put on some extra weight, and looks like the proverbial "Spare Tire" so many of us try to keep off. 
  Internal scar tissue then causes extremely severe stomach pain. You constantly feel "full", as if you had just finished a 9 course Thanksgiving dinner. The pressure from constantly feeling bloated, along with no longer allowing your stomach muscles to function, then creates, yet again, a crippling amount of pain. 
  Unable to "repair" this scar tissue, you now become a patient with the "Pain Control Clinic". Or "Pain Management". Now it becomes a series of "Trial and Error" prescriptions for pain medication, until you find the one that "controls" or "manages" your pain. 
Sounds simple enough. But, alas, there is to be no such solution for yours truly. 
  Do you have ANY idea how many different pain medications are on the market?  OMG!  Over the last 8 years I think I have tried every single one! Sometimes several different ones all at the same time. 
  I have had injections into my back, pain "patches", even anti-depressants. I have a "Spinal Cord Stimulator" implanted on my butt cheek that has wires running up and down throughout my spinal column. This device sends "vibrations" to various portions of my stomach to try to "over ride" the pain. 
  I have had a Celiac Plexus Block, like an Epidural, all with no relief from the pain. After trying everything else, even KETAMINE, the horse tranquilizer, it seems 30 milligrams of Morphine, 3 times a day, offers as much relief as I can get. And that's not much. 
  Now you know about my life and my constant companion, "Chronic Pain". Most days I am able to get by on the Morphine pills, and do the things I have to do. Get groceries for my 91 year old Mom once a week, pick up my Granddaughter Ashlie after school every day and entertain her until her Mom gets off work...but once in awhile...every now and then...with no apparent reason...the pain flares up out of control, and I have no choice but go to the ER and get some massive Morphine injections every hour until the pain starts to slack off.  There are still some procedures the Doctors are going to try in the coming weeks, and who knows...one of these days, one of them might just work. I haven't given up hope just yet. And I say the same thing to anyone else suffering from one type of chronic pain or another...
Never give up hope. 
  If you read this to the end, I say thank you for taking the time to find out a little bit more about me. 
If you'd like to share your story with me, I'll always take the time to listen and respond. Reach me at:

  

Thursday, June 16, 2011

Understand my pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about things, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
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