I'll Be Gone When The Drugs Wear Off

I'll Be Gone When the Drugs Wear Off

2 pills taken.

I've been addicted to narcotics for over eight years now. The drugs and their doses I have to take make morphine, percocets, vicoden, oxycodone and heroin look like tic tac's and fun dip in comparison. I've been high every day for the last eight years, non-stop, 24 hours a day. It's not my choice. When I first got my prescriptions from my primary care physician, she told me, "I'm going to make you into a drug addict. It's the only way we are going to be able to manage this pain." Then we went through trials of every narcotic, neuropathy med, and sedative available until we found something that started to reduce my pain. Nothing gets rid of my pain completely, but the cocktail of medications I'm on now reduce it by about 20%-30% on a good day. On a bad day, it's just a soul crushing nightmare. My leg feels like I have Mount Vesuvius erupting under my skin over and over again, where under my knee is the fulcrum of that volcano and its eruption, and the lava flows down causing a nightmare of agony along my shin and ankle.

When I first realized something was wrong with my leg, I had just gone through a “routine” procedure by a cardiologist in Houston, TX. Don't mess with Texas. Seriously, don't, if you get sick there, just f*****g fly home immediately or go to Mexico, you'd probably have better luck. I had been diagnosed with congestive heart failure, which took these geniuses 4 ER trips and 4 wrong diagnoses for that, and now he needed to perform a cardiac catheterization; which is to run a long guided needle through my femoral artery in my leg, up to my heart, and check out my arteries and everything. I was awake for the procedure, and it was the scariest thing I'd gone through in my life up until that point. You're sitting in your hospital gown, that can never quite cover your whole a*s, and they wheel you in on a gurney into an operating theater. It's freezing, there's a metal slab in the middle, which is the patients' table, and monitors and beeping machines all around you. It's cold, devoid of humanity, and unwelcoming to someone who in that moment just needs comfort. After I was brought in, I realized I was being stared at by about ten people. Nurses moved around big trays of sterilized sharp equipment, the cardiologist, and his interns all wearing pale blue and looking like lunatic smurfs, and then the anesthesiologist, playing with bags of medicine that would take me to Neverland in case something went wrong. I tried to slow my breathing, focus on the ceiling, count the tiles, and calm down. I had a bad feeling about all this, just a feeling in the pit of my stomach. Could have been the hospital food, but I doubted it.

4 pills taken.

A nurse looked to another nurse and asked her as she just started lifting up my gown, with a razor in her hand, “Do I...Do I shave around the penis?” I should have leaped off that cold steel slab, closed that stupid gray and blue gown around my white pale a*s and ran. I was obviously being used as a teaching case. A chuckle, a guffaw, the gown still being held up and my balls are now freezing in the draft. “No, no, just the right upper thigh and groin.” The cardiologist is starting to talk to me at this point, but I'm barely apprehending what he is saying because the nurse begins to lather up my left leg. Another different nurse takes her by the shoulder and is whispering in her ear now, and she wipes that lather off and gets it right with the second try now. These idiots are going to kill me, is all I thought. I told my wife this fact later on, and she threw a fit. She was a floor nurse at the time as well, working at the very hospital I was admitted at, and they wouldn't allow her in the procedure room. If she had been in there, at least she could have guided them through some better manscaping.

6 pills taken.

So we get through the awkward shaving and the cardiologist begins to numb up my leg so he can put in the catheter. I'm looking around at screens which are showing x-rays of my chest, other machines beeping with numbers flashing, and poles all around me hanging with bags of who knew what. This was hell and the devil had his long pointy spear ready to pierce my flesh. He pushes the giant metal needle in with his right hand, his hands in those awful blue latex gloves that reminded me in that instant from the guys on the TV series Firefly, “Two by two, hands of blue,” and his left hand holding my thigh tightly. “Hrmmph.” Doctor McDippy sighed, and that reassuring sound just made my nuts jump further up into my abdomen. I couldn't deal with this, I just closed my eyes and focused on the cold steel on my a*s and the sounds of the machines beeping. Counting the beeps.

Someone asked me a few times if I was OK. I think I groaned at them, I can't be sure. I know after that no one asked me another question, and I thought I would have wanted to punch them at that point, so all for the best I had thought. I gritted my teeth, dealt with the discomfort and the draft on my undercarriage and got through the ordeal. About thirty minutes of that nonsense, them typing up what was being said by the Doc and they gingerly slapped a bandage on my leg. Then they lifted me over to a new gurney, which felt as hard as Chinese calculus and pushed me out to the recovery room. Here's where things should have sent off alarm bells left and right.

In the recovery room, I was barely sitting upright, feeling awesome on the plush pillow top mattress they give all recovering patients...nope still a rubber slab gurney... and noticed that the bandage was now soaked with blood from the puncture site. I told an orderly and he came over, you know when he got a minute and put his iPod down. He told me it was normal and he put both his hands over a new bandage he applied and pressed down as hard as he could. It hurt like hell for as long as he kept the pressure, which was a good twenty minutes, which was awkward having some dude pressing down on me for that long in near silence until he thought that the bleeding had stopped. It hadn't. It just had stopped bleeding out. See I thought they would tell a Doctor, didn't have to be my doctor, just a doctor, of any complication. Nope. Methodist Hospital, on the Fortune 100 list of best companies to work for. Just don't get sick in that place.

So the bleeding had stopped, or so we thought. Then the cardiologist sent in an intern to give me and my wife his discharge orders. The intern, as we found out later, ordered me to take way too much of a blood thinner the doctor had prescribed me. It was a blood thinner that had to be injected into my stomach twice a day, and it was an extremely strong blood thinner. Bad idea. After the first two doses, on the first night home, I knew something was horribly wrong. A pain which is indescribable. I've broken over 20 bones in my life and no injury has ever come close in causing me the type of pain I felt that night, and continue to feel to this day. I couldn't stand up. I tried to get out of our brown king sized sleigh bed and keeled over with a thud and a scream. My leg had turned dark blue and bright red at the same time, it looked like a beach ball and was about the same size as one. Seeing as I had lost almost half my blood volume into my leg, this made sense.

I couldn't stand and was getting light headed so I told my wife after she rushed into the room, hearing my girly scream. Her description. She took one look at it and; Cue the ambulance, a fire engine blasting its siren and a trip to the cardiac ICU which was to be my home for the foreseeable future from that point on. The ER doc told Emily, my wife, that had she waited even another 10-20 minutes, I would have died. The big shot cardiologist came strutting around, hours later, talking about risks of any surgery, how my arteries looked great and my cholesterol was better than his, blah blah f*****g blah. I wanted to punch him. But I couldn't even keep my eyes open, but I could see my wife. She was Irish mad. Especially when he told me he wanted me up and walking around within two days. I could not stand up, I was crying in pain since being brought in on a stretcher, and no one had any f*****g idea why! Emily is usually the shade of alabaster cream, but her cheeks were now as red as the fire truck that showed up to our house earlier. I just know there were some words exchanged, loudly.

They thought they would get the swelling down, adjust my cardiac medications, especially the blood thinners they seemed to royally screw up on, and everything would be right with the world. They did all this, and I was still in absolute agony. They tried to send me home on Vicoden. While I still couldn't walk. Needless to say, this is a violation of so many policies that my wife brought to their attention, so they decided to look into my case further, you know, just in case I wasn't faking it...which they did at one point, and showed it with their outright enthusiasm when having to deal with me.

You see, they thought it was psychosomatic. All in my head. There was nothing wrong with my leg visually, structurally, anything they could pinpoint. Then my knee turned blue and the hair started falling out on my leg; all of a sudden I had heads of departments stopping by to see me. I went two weeks of nonstop prodding and testing with no hint of an idea of what was wrong. The problem with that was that my leg was so sensitive to touch, that even a bed sheet made me scream out in pain. My pants hurt to this day whenever I wear them. From my right thigh, down to my ankle, the entire front of that leg is just a piece of flesh that feels nothing but pain. I couldn't feel hot or cold, just pain. Doctor Shitforbrains referred me around the hospital to everyone and their moronic sidekicks, with no luck and no answers. Just that tone when they couldn't figure out what had gone wrong of, “Well, s**t happens!”

Then we met Dr. Edmunson, head of neurology at Methodist Hospital. The only person, according to my wife and I after meeting him, that had a brain between all these physicians. He ran the pain clinic and all the clinical trials. He was the guy everyone else brought in when everyone else couldn't figure it out. Shouldn't of someone called him in sooner, or at least told us so we could have called him in. Jesus.

8 pills taken.

It took him all but two visits with me to diagnose me correctly. My wife and I had taken to researching all of my symptoms on the internet in between dealing with the Farkle family of physicians, and we had a couple of ideas of what it was. Turned out, we were right with our number one prognosis on our list. Dr. Edmunson tested the temperature between my limbs, my right leg is about 3 degrees colder than my left. The excruciating nonstop pain, interspersed with lightning bolts of even stronger different currents or types of pain. Like when they ask you if your pain is sharp, or dull, or stabbing, or throbbing, or cutting, or numbing, or tingling, or pulsating, etc. My answer to all of these is always just, yes. A problem when Cardio-Genius punctured through my femoral artery, “Genius.” I said that out loud when told of his surgical adventure that irritated my femoral nerve. That nerve then somehow screwed up the wiring in my brain. It no longer sends down nonstop regular signals to that nerve, like just checking in on it; “what's up leg? you good?” Yeah, all good, leave me alone. Nope, now it's just sending down nonstop pain receptor signals like my leg is being sawed off over and over again, with a rusty dull pocket knife by a drunken a*****e with shaky hands. Then he noted discoloration and the hair loss, and extreme sensitivity to any touch. Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome. CRPS. My shiny new diagnosis. Yay?

Edmunson told us that of all the patients that go through his pain clinic in Houston, I was only his second confirmed case of CRPS. It's a very rare chronic pain disorder, that usually affects younger or really older girls and women. I thought he was calling me a baby girl, but realized he was just pointing out how s****y my luck really was. He showed us the McGill pain index. At that point I had been in that stupid remote controlled uncomfortable bed for nearly a month, with two crappy flat pillows, in non stop hell, having people tell me that it's in my head, that thinking about the pain is making the pain worse. Thinking I was going crazy.

That diagnosis and the McGill thing made me sane again. CRPS is the worst chronic pain condition known to man. They rate chronic and acute pain (taken on a huge scale of information of doctor and patient questionnaire's from 1971 to now) on a scale from 0 to 50. CRPS (type I and II) is the highest, at a 44-47 on the scales. A near second is, cutting off a digit/amputation, at a 40. Next is a womans first childbirth, with no training. Fibromyalgia is 30. Chronic back pain (often cited as “the worst” by other people who want to relate to me. Wanna trade?) is a 26. All under 20 is fractures, toothaches, arthritis and other similar ailments. This scale helped, and helps me explain my pain to people. When people would ask what it felt like, instead of some cliche response, I could just tell them: “Go cut off a finger, then wait for that pain to subside, then cut another off. Repeat.” (I do not condone the cutting off of digits.) But seriously, don't try that at home kids.

We had our diagnosis, now the drug trials began. First up was a procedure called a nerve block. It's a CT scan guided needle placement right to your spine to deliver medication to cut off the signals from your nervous system to the afected nerves and limb. When done early enough in the diagnosis of CRPS it's supposedly quite successful and can actually sometimes stop all symptoms dead in their tracks. Not for me. No relief at all. I couldn't catch a f*****g break. So next we tried fentayl patches and neuropathy meds. Fentanyl is another hardcore narcotic. Did nothing. He tried giving me all sorts of anti-depressants, which studies showed helped some CRPS sufferers, because it mixes up the signals in the brain that deal with the pain receptors. Those just made me into a drooling zombie and took away any and all erections. Down the toilet those went, and fast. Happy wife, happy life. I didn't need another problem.

At this point, we were months into my hospitalization and I still was not able to walk because of my leg. Not only that, but the pain was getting so bad, that it was starting to further deteriorate my heart. The pain caused more hypertension, and after a nice bout of chest pain one afternoon, the cardiologist team decided to put in an internal pacemaker and defibrillator. Shocking. Literally. After that surgery, physical therapy and the cardiologist came to give me the run down. No salt, no caffeiene, no sugars , and no sex until you can walk up two flights of stairs. “So, what are we going to focus on doing today, James?” The physical therapist asked a stupid question on my first visit, so I gave her a stupid answer. “Stairs!”

“Let's start you with trying to walk with a walker, first.”

Ugh, fine. I guess walking first was important, but then stairs were the mission.

By the way, how are caffeine, sugar, salt and sex all horrible for your heart, but heavy narcotics, yeah those are ok? Anyway...

After that nonsense, Dr. Edmunson then took me down to an operating room with an anaesthesologist and put me on a ketamine drip. That s**t is whacky. Talk about trippy! He told me after the treatment that all I talked about for 2 hours was New England Clam Chowder. In vivid detail apparently. I really have no recollection of that experience, except the initial euphoria and then waking up in recovery, and for the first five minutes I felt no pain. It was gone. Edmunson came over, touched my leg, and it came shooting back. My wife cried, all five feet of her hunched over in her plastic bedside chair. She was the only one keeping me together at that point, and I realized that no one was there to keep her together. We had been married less than a year, together since we were 17, and she had to deal with all of this too. Not what we had both signed up for. She had to work all day as a nurse, then she got off her shift, walked down the hall to my room, and slept there with me. Advocating for me, and nursing me. She wasn't eating nearly enough, and not taking time to take care of herself. The day after that ketamine drip didn't work, she collapsed at work from pure exhaustion and nerves. No one told me. They thought it would kill me.

I found out after badgering the nurses on the floor, since my wife had pulled strings to have me placed on her floor, I knew them all and could read them all pretty well. I knew from the way they were trying to get in and out of my room as quickly as possible, that something was up. Once I got that information out of them, I told them to tell me when she woke up and felt better, and then I called Emily's mother. Her mom was also a nurse, a cardiac care nurse with over 30 years of experience at Mass General. She flew out that night, and she's the one who probably got us to come back to Boston, or at least she pointed out to us that we needed better care, right away. She helped take care of my wife and my mother, who was also going through a traumatic experience of a bad divorce from an abusive husband and father, while all this was going on. I got sick about two months after they separated, never heard from him again. My mother told me that she had contacted him to tell him what had happened to me, not even a phone call. Nice guy. From that point on we never referred to him as dad, or by name ever again, just as “Shithead.” Trust me, it's fitting.

But, Emily's mom just made it clear that we needed to get the hell out of there and get back to Boston, or I was probably going to end up permanantly in a wheel chair or dead. I still couldn't walk on my own at this point, I needed help to bathe, and Edmunson still was trying to figure out which combination of medicine would work best. The week before we left, he faxed all of my records up to Mass General, and to my new primary care physician Dr. Adrienne Knopf, with his recommendation of which medications she should proceed with next. One was a new drug, a redeveloped version of an earlier narcotic, called Oxymorphone or Opana. It's about 7-10 times stronger than morphine. This is used for my extended release, all day long narcotic medication. The other was Dilaudid, or hydromorphone, which is 5-7 times stronger than IV morphine as well. Used for breakthrough pain.

I was put on IV dilaudid at first, for about a month. Every 3 hours a nurse would come in, push 5mg of IV dilaudid, and I would be stoned out of my mind in about 20 seconds. Or they gave me my own PCA pump, where I got to push the button for 1mg doses every 20 minutes. It didn't take away the pain, it just made me not care about it so much. I understand a junkys chase for that euphoria, because every time that nurse would push that dose, I felt it. I could smell the medicine, I could differentiate the difference between the meds just by the smell when they opened up the vials.

But after they blew out every single vein I had, even going so far as trying to push the drugs into veins in my wrists, then putting in a permanant PIC line, which is cut into the artery in my arm, my doctor knew we needed to get on a cycle of oral medication so I could get out of the hospital. So now I get my Opana 150mg/12 hours, I get a bottle of only 100 pills of dilaudid every 9 days (stupid DEA and their “rules”). Then, because it takes me three hours to get to sleep every night, because just touching the bed itself or a bedsheet touching my leg causes so much pain, I get sedatives for the night time as well. Handfuls of pills every morning and every night for the past 8 years. My memory has been affected. I used to have a great memory, now it's horrible, I think. I couldn't tell you what I had for breakfast yesterday without really thinking about it. I had to think about how old I was when someone asked me recently. I hate these drugs, but it's the best chance I got.

When I go in for my check ups, I get tested to make sure that I'm taking the drugs. There must be some file in some D.E.A. Office somehwere with my name on it. “This guys taking how many narcotics? No way...flag that.” Great. I don't like this. I don't like this pain. I don't like being tired all day long. Because of my heart, I can't drink caffeine or eat anything with more than 20g of sugar. Add in every bottle of pills I have says “May cause drowsiness,” and guess what? I'm f*****g drowsy, all day long. Yet, I can't fall asleep! I wake up exhausted, after I finally do fall asleep.

Taking a shower is the worst part of my day, because I know how bad that water is going to feel when it hits my leg. It takes me hours to get high enough or get the courage to get in there to do it. I can't play with my son whenever he wants to, especially if its a rainy day, because for some reason the pain is just worse on those days. I can't run around with him, I can't run. But I try. I never want him to feel like I won't put him first, even before this god awful disease. Sometimes my wife will tell him, “Don't bother daddy, he's in a lot of pain right now.” He'll come in anway, which always makes me smile, asking if I'm all better yet? And I'll get up, hug him and look in his beautiful blue eyes, and I'll tell him it's OK, and ask him if he wants to play catch or play hide and seek, or shoot the basketball outside, or play the Wii. Whatever he wants, if I can do it, I'll do it with a big god damn smile on my face, no matter how much it hurts. I always try to hide how much this really hurts.

I've been to support groups for people who have CRPS, on the advice of my doctor here in Boston at first. Two of them, two girls, committed suicide, they couldn't handle the pain. I stopped attending those after dealing with that. If you look up the statistics for people with this, the percentage is offly high for those who harm themselves. The disease is systemic. It's everywhere. It has an over 80% chance of spreading to your other limbs. Mine hasn't spread, yet. Hopefully it won't.

If you get so much as a sprain or bad cut in another limb, you risk it spreading. One of those young women had it in her right arm, and it spread to her entire body. The drugs just wore off for her, and didn't help at all any more. Nothing could mask her pain. I get it, I can understand her reasoning. My tolerance level for these narcotics is getting to the point where I keep needing more and more to have an effect. Not good. If I had a choice between being in severe congestive heart failure still, or having this atrophied limb, in pain, with this disease still, I'd choose heart failure all day long. I could get a new heart. No more popping pills every 4 hours like they are breathmints. No more nightly nightmares of being in some war and having my leg blown off by some grenade or something and I wake up in a sweat, and my wife tells me I was crying in my sleep. No more walking through a haze of narcotic side effects. No more pain. Please, no more pain.

10 pills taken.

By

James Gesner

@JamesGesnerSBG