If you read this entire blog from the beginning, then you know that I am a drug addict. Specifically, I was addicted to cocaine for 3-4 years and nearly died from it. I am now in remission, have been clean and sober (I believe alcohol is a drug) for 3.5 years. I am active in recovery (although there have been long periods of time that I am not) and I follow a 12 Step Program (Narcotics Anonymous). So I believe that I suffer from a disease of addiction, that can be contained but never cured. It is like having diabetes- you can't have too much sugar. You have to do a number of things to make sure your blood sugar levels are safe, you have to maintain your disease by doing certain things- some of which may be uncomfortable. And you will always be a diabetic. That's how it is for me. I have to do certain things so I don't relapse. And I will for the rest of my life.
So what happens when a doctor says to the drug addict, I will give you pain medicine (narcotics) to help deal with your chronic pain? Do you do it? At what cost? It scared me. I wasn't really addicted to narcotics, cocaine was my "drug of choice..." but it really doesn't matter. I am a drug addict and should avoid any mood/mind altering substances. Some people in NA are hard core, and believe that an addict should NEVER take anything addicting or mood altering; as in no anti-depressants, no drugs that help reduce cravings, no other medication to help through initial drug detox, and no pain medicine. I believe it is a personal choice for each individual to make, along with help from their sponsor.
I had become lax in maintaining my disease...it doesn't matter how many days or weeks or months I have clean- the addict inside of my is alive and well. It tells me that I am doing great and don't need those meetings. It tells me that nobody gets me and that I am different from all those other addicts. It tells me that a sponsor doesn't really know me. And when I feed that voice, I start to think I am normal and stop all my recovery stuff. Usually, I tell myself that if things get bad, I know where to go. Well that is also addict-talk. It took some comments from my parents to help me see where I was headed. So I got my ass back to meetings.
My sponsor and I discussed my situation...we decided that I did not need to be a martyr. I could find a way to take the pain pills safely and as prescribed. My fear was that if I did not get control of the pain, then I would get more and frustrated and tired and hopeless and eventually start using my drug of choice for some relief from all the discomfort. Far better to take narcotics safely and control my pain so I don't go wacko. Some addicts that take pain medicine have a non-addict hand then their pills. I did that at first- my father would leave only enough for me for a few days at a time.
Honestly, my addict is so strong, that she even told me that I couldn't go to meetings if I was taking pain pills. And then I lied and told my mom that's why I didn't go to meetings. Not true. My addict will make me lie to myself and anyone else nearby. My sponsor helped remind me that what I do regarding this is MY business, and I don't have to share all the details with everyone in the program. And I don't. I share enough to get support and to give support. I have an instant family when I am active and go to meetings. People that do know me and how I feel. That is the truth. The other things my addict tells me are lies.
When I started seeing the pain management specialist, The doctor told me how proud he was of me- that I came on my own for help, and was honest about my disease and recovery. The doctors in his office make me drug test occasionally and bring in the pills I have left over so they know exactly what to prescribe. They speak to me about limits. They have me try other medications other than narcotics for pain. I feel so much better, knowing I have someone watching me, monitoring me. It doesn't show my weakness, it shows my strength and wisdom. I am strong enough to take the right precautions, knowing that I have a disease of addiction that can kill me. And I am not going to let my battle with AVN take me there.
Tuesday, July 10, 2012
Friday, July 6, 2012
2nd, 3rd and 4th Opinions
It was time to take a good hard look at where I was. I forced myself to take the emotion out of my situation. Yes, I was angry at Dr #4- but that anger wasn't going to help me figure out what to do about my AVN. I pushed all that anger, and the fear, shame and shock out of my head. That stuff I would deal with in my NA meetings and by working with my sponsor. But outside of that, I needed to get a good doctor that respected me and was competent dealing with my diagnosis. Someone who would present me with all of the options and help me make a decision that was right for me.
So I got on the phone. I know plenty of people in the medical field! My parents had friends that had had hip replacements! And my back surgeon (Dr #3) had a partner that was a hip specialist. I had plenty of resources to work with. I made some calls and soon I had a list of 4 doctors that had good recommendations from people I know. I got on the phone and made appointments. One couldn't see me for over a month, so that wasn't going to help much. In the meantime, spent more time online, learning as much as I could about AVN and all the current treatments. When I went to all these doctors for their opinions, I wanted to know enough to at least ask the right questions. I went to each one of them with copies of every MRI and Xray, and the all the radiologist reports. I'll basically summarize what they said:
1. This doctor said he thought that my pain was just from arthritis. He suggested no weight bearing on my left hip and to take anti-inflammatory drugs and the pain would subside in about six months. He actually said "I think you should do nothing- people live with AVN their whole lives without doing anything surgical about it." He did say thought that there was a good chance that my femoral bones would collapse, and then I would need a THR. This just didn't sound right to me. I had done enough research to know that AVN doesn't get better, and there are options to at least explore besides just waiting for my bones to collapse and then being forced into the only option at that point. And what about the pain I was in? What good did taking all the pressure off my left hip, if I had AVN in my right hip as well? Just didn't make sense. I thanked him for his time and left.
2. This doctor basically discussed total hip replacements. He said that he didn't think core decompressions had a good enough success rate, especially with the severity of my lesions. He talked about the minimal approach THR. When I asked about the Free Vascularized Fibular Graft (FVFG), he said it had a better success rate, but good luck finding someone to do it. He did agree that if you had a surgeon trained to do it, it was a reasonable option for someone my age, but he didn't know anyone who did it. He said that a prosthetic hip's life expectancy is directly related to the amount of impact you put on it. He admitted that I would most likely need 2 revisions in my lifetime.
3. This doctor went over all of the options I mentioned above- from doing nothing, all the way up to THR. He explained to me his approach- that the goal of medicine should be to preserve a patient's own body as much as possible. He talked a lot about the FVFG and said that if it works, you have your own body parts with no limitations. He said with artificial hips there are limitations- yes people chose not to abide by them, but that shortens the life of the artificial hip. I asked about the success rate of FVFG and he told me it was quite good, especially for my staging, and told me about the work being done at Duke. He was honest about the long recovery process. He then went on to say that I was lucky because one of the surgeons who trained at Duke when the procedure was being developed in the late 70's was very close- at USC. He gave me his name and number and said go see him- what have you got to lose. He said if I was you, I would be getting the grafts.
I had gotten good information from three different physicians. On one hand I was frustrated by a disease that had such controversial treatment options. AVN was NOT an easy disease to treat. On the other hand, I was grateful to have options available. And I realized that Dr #4's outburst was a gift in disguise. He did me a disservice by how he treated me, and I didn't even realize it til I got all of these other opinions. He did not realistically discuss all of my options. He quickly dismissed them saying they didn't work, rather than explaining them to me and letting me choose. But he is a joint replacement specialist. Most of what he knows revolves around replacing joints. For all I know, maybe he realized this, maybe he felt that he had led me too quickly into a THR and didn't really consider the other options. Maybe his pride got in the way, and instead of just telling me that he should have reviewed other treatment options with me, he had to blame it on me and what I hadn't done. Or maybe it wasn't that complicated- maybe he was just mad that I hadn't quit smoking and simply didn't understand addiction enough to be compassionate about his approach. He was right- I needed to quit. Whatever happened, he was still one of my least favorite people (he really was so mean), but in the end, his freakish behavior turned out to be a very good thing for me.
Regardless, I knew my next step. I called USC and made an appointment with Dr. Milan Stevanovic. I would see him in about two weeks. And in the meantime, it was back to the computer to research everything I could about FVFG.
The light goes out
I was looking forward to my appointment with Dr #4. I had questions about surgery (THR) and recovery. I was excited to get on with things. I had lined things up with friends and family- we were all ready for surgery- now just 3 weeks away. But the appointment did not go as planned.
It was like someone took the Dr #4 that spent so much time with me and was compassionate, and replaced him with a monster. Remember, I am a nurse. My dad is a surgeon. My sister is a surgeon. I have worked with doctors for over 20 years. I know the personalities. I'm okay with demanding and arrogant personalities- to an extent. I am not even sure that I can accurately convey how I was treated during that appointment. I was yelled at. I was treated like an idiot. I was accused of not taking care of myself. I have never, ever, in all my years as a patient, as a nurse, as a daughter heard a doctor speak with such disrespect toward a patient. And that patient was me. Dr #4 was obviously pissed off that I hadn't quit smoking yet. He berated me for that. I was so disappointed because he is a physician. I am a drug addict- yes I am in remission and clean, but I will always be one. I understand addiction as a patient and as a nurse. It is so shocking that those in the medical profession refuse to understand what addiction is. I am addicted to cigarettes. I wish it was easy to quit on demand. I wish I didn't love smoking. But that's not how it works, and instead of approaching it that way, as the disease and medical model of addiction, my doctor tried to shame me in submission. That doesn't work. Ever. I wanted to be strong enough to laugh in his face when he implied my weakness- I wish I could have looked in his face and said- "Now hold on doc- I quit cocaine! But it wasn't because some incompetent fool yelled at me!" But instead all I could do was choke back the tears. And at that point, I completely lost faith in him. And he has a reputation for being the best doctor for hip replacements. What a let down.
He went on to say I should get a second opinion. He then ripped me apart because he accused me of not being prepared for surgery, or understanding it and the recovery process. He said I wasn't using the walker all the time, like he said to (which he did not). He was all over the place. Even my dad was fuming. At the end of all of this, I told him that I didn't understand why last week he was so willing to set a surgery date and now, 7 days later, he was suggesting a completely different plan. What changed? Didn't he understand what this means to me? I have been in pain for 7 months! I thought we were headed towards surgery and then this was thrown in my face.
My father and I walked out. I was shaking and sobbing. I felt like the roof had just caved in and I was lost again. I wish that Dr #4 could have been me, and really appreciated how he made me feel. My dad didn't know what to say to me. I actually think he was a bit embarrassed on behalf of his profession. But mostly, I think his heart was breaking watching his daughter struggle through this. Watching me crumpled and humiliated and full of shame. He saw me like this before- when I went into rehab. And then he watched me work through it, find myself and my strength. He saw me work hard to get my life back. To crawl out from the shame. And then, today, he witnessed a stranger bring me right back to that ugly place.
All I knew at this point was that I was back at square one. I couldn't let that man touch me. I don't care if he was the best hip surgeon. It takes more to be a good doctor than technical skills in an Operating Room. I went home, crawled in bed and slept.
Walking towards the light
The next month was a blur at first. It really took me about a week to just adjust to my new diagnosis. It was strange- the gamut of emotions that I was feeling. The most surprising to me was that I felt relief! I felt validated- that my pain wasn't in my head. That what I was feeling, subjectively, was due to something really wrong with me- something that could be seen, objectively! One of the worst things about pain (for me) is that unless you are bleeding or obviously broken, or showing some signs of trauma, people don't get it. It's almost like they are skeptical. And I have been guilty of this. I am a nurse! I had to listen to patients complain about pain all the time. I had to judge whether their symptoms matched their complaints. And often they did not! There was a whole movement years ago about whether we, as a medical community, were addressing and treating pain appropriately. That's why nurses and doctors ask us to rate out pain (you know that 1-10 scale...) over and over again. It's an attempt to objectify and subjective feeling. And with the rise of the abuse of pain medicine, sometimes this assessment/treatment thing gets very tricky. But I digress... It felt good to know that there was a reason for my pain. A diagnosis. Other people have this! And better yet, there are treatments. There is controversy over the particular treatments I had to chose from (as I would learn in even more detail later), but there were treatments! Choices! Some patients have none. For this, I felt gratitude.
But that was pretty much it for the positive emotions. I also felt anger (why me?). Sadness (why me??). Confusion (why me???). Despair (why me????). I threw a pretty decent pity-party for myself. It lasted about a week, and I threw a darn good one. I was irritable. I snapped at my kids and family. I slept a lot. I smoked a lot more (no I wasn't one of those patients who after smoking for so many years suddenly stopped when learning that my smoking was finally showing how unhealthy it was). I isolated. I cried. I cursed. I let those horrible visions of the wheelchair-living, donut-eating, cat-breeding, disability-getting lonely lady fill my head.
But then I stopped. I threw myself deeper into my recovery and 12 Step program: Started working with my sponsor more, going to more meetings. I went to the pain management doctor and committed to work with his team so that I treated my pain correctly. I wasn't going to be a martyr, but I was worried about addiction to the pain meds. I reached out to friends again and shared what was going on, talked about it. I spent hours and hours online, researching and looking for anything I could about my diagnosis. I practiced asking for lots of help. I practiced accepting lots of help. I started taking care of myself again, and being kind to myself. I started a diet- a serious one. I used the Medifast program and stuck to it. It's hard to lose weight when you can't exercise- but I did it. I made another appointment and got my hair done. I got a few massages. I took a trip- so see my college roommates in Phoenix. I wasn't sure about going, but my mom actually encouraged me to go, I hadn't seen those friends for so long. And I needed to get away from the stress. When I got back, I helped my best friend plan her wedding. I started reading again. I started listening to music again. I started enjoying my kids again. I started doing more. Even if it hurt. I took my pain medicine and got outside. I was determined to be emotionally and physically prepared for surgery. I wanted to be normal again. I wanted to not be in pain. I wanted to move forward, fix my problem the best I could, and resume life...
My biggest hiccup was the smoking. I cut way down, I really did. I had been a half to full pack a day smoker and I was down to less than half a pack a day, usually less. But I hadn't quit. I couldn't even use nicotine gum or patches. Remember- it wasn't the "smoking" part he was worried about- it was the nicotine and how it caused blood vessel constriction that was my biggest enemy. I had to just stop.
About four weeks after seeing Dr #4, I suddenly started having much worse pain. I could barely walk. Sometimes my pain would "flare up" for a day or two and then back off if I slowed down and rested. But this time it didn't, no matter what I did, it was worse. So I called the doctor.
Dr #4 was very kind when we spoke on the phone. He said that it was time I started using a walker- to get the weight off the left hip. This was for my comfort, and also to prevent the femur from collapsing (some of you may be wondering why he didn't have me on a walker or crutches to begin with. It's a good question.). He told me to use it when I was hurting a lot. He didn't want me to stop moving, but also didn't want me needing more narcotics. He asked me how the smoking was going. I told him the truth. He said he needed me to be smoke-free when he operated. The he asked me when I would like to have surgery- a total hip replacement (THR), i.e. what date in the next month works with me in terms of getting the help and support I would need afterward. He reminded me that I would be able to do anything I wanted to once I had healed, that my life would be perfectly normal, no restrictions. We chose a date. He told me to call his office back that afternoon and schedule an appointment with him for a week before surgery, and also said there would be some other things I would need to do to prepare that his assistant would go over with me. I reminded him that I had an appointment with him in a week, and ask should I keep it? He said he had forgotten, but keep it and we could talk more about the surgery in detail. He even joked and said don't forget to bring your dad!
In the next week, I had gotten a walker and a cane. I was down to about 5-6 cigarettes a day. I was down 10 pounds already too! My family and friends had the surgery date on the calendar and we were starting to makes plans for it. I let my boss at work know the latest and was finally able to give them a tentative idea of when I may be back. I wasn't happy about getting a fake hip, but for the first time in months, I could actually see light at the end of the tunnel. Even if I was limping toward it, I was making progress!
But that was pretty much it for the positive emotions. I also felt anger (why me?). Sadness (why me??). Confusion (why me???). Despair (why me????). I threw a pretty decent pity-party for myself. It lasted about a week, and I threw a darn good one. I was irritable. I snapped at my kids and family. I slept a lot. I smoked a lot more (no I wasn't one of those patients who after smoking for so many years suddenly stopped when learning that my smoking was finally showing how unhealthy it was). I isolated. I cried. I cursed. I let those horrible visions of the wheelchair-living, donut-eating, cat-breeding, disability-getting lonely lady fill my head.
But then I stopped. I threw myself deeper into my recovery and 12 Step program: Started working with my sponsor more, going to more meetings. I went to the pain management doctor and committed to work with his team so that I treated my pain correctly. I wasn't going to be a martyr, but I was worried about addiction to the pain meds. I reached out to friends again and shared what was going on, talked about it. I spent hours and hours online, researching and looking for anything I could about my diagnosis. I practiced asking for lots of help. I practiced accepting lots of help. I started taking care of myself again, and being kind to myself. I started a diet- a serious one. I used the Medifast program and stuck to it. It's hard to lose weight when you can't exercise- but I did it. I made another appointment and got my hair done. I got a few massages. I took a trip- so see my college roommates in Phoenix. I wasn't sure about going, but my mom actually encouraged me to go, I hadn't seen those friends for so long. And I needed to get away from the stress. When I got back, I helped my best friend plan her wedding. I started reading again. I started listening to music again. I started enjoying my kids again. I started doing more. Even if it hurt. I took my pain medicine and got outside. I was determined to be emotionally and physically prepared for surgery. I wanted to be normal again. I wanted to not be in pain. I wanted to move forward, fix my problem the best I could, and resume life...
My biggest hiccup was the smoking. I cut way down, I really did. I had been a half to full pack a day smoker and I was down to less than half a pack a day, usually less. But I hadn't quit. I couldn't even use nicotine gum or patches. Remember- it wasn't the "smoking" part he was worried about- it was the nicotine and how it caused blood vessel constriction that was my biggest enemy. I had to just stop.
About four weeks after seeing Dr #4, I suddenly started having much worse pain. I could barely walk. Sometimes my pain would "flare up" for a day or two and then back off if I slowed down and rested. But this time it didn't, no matter what I did, it was worse. So I called the doctor.
Dr #4 was very kind when we spoke on the phone. He said that it was time I started using a walker- to get the weight off the left hip. This was for my comfort, and also to prevent the femur from collapsing (some of you may be wondering why he didn't have me on a walker or crutches to begin with. It's a good question.). He told me to use it when I was hurting a lot. He didn't want me to stop moving, but also didn't want me needing more narcotics. He asked me how the smoking was going. I told him the truth. He said he needed me to be smoke-free when he operated. The he asked me when I would like to have surgery- a total hip replacement (THR), i.e. what date in the next month works with me in terms of getting the help and support I would need afterward. He reminded me that I would be able to do anything I wanted to once I had healed, that my life would be perfectly normal, no restrictions. We chose a date. He told me to call his office back that afternoon and schedule an appointment with him for a week before surgery, and also said there would be some other things I would need to do to prepare that his assistant would go over with me. I reminded him that I had an appointment with him in a week, and ask should I keep it? He said he had forgotten, but keep it and we could talk more about the surgery in detail. He even joked and said don't forget to bring your dad!
In the next week, I had gotten a walker and a cane. I was down to about 5-6 cigarettes a day. I was down 10 pounds already too! My family and friends had the surgery date on the calendar and we were starting to makes plans for it. I let my boss at work know the latest and was finally able to give them a tentative idea of when I may be back. I wasn't happy about getting a fake hip, but for the first time in months, I could actually see light at the end of the tunnel. Even if I was limping toward it, I was making progress!
Wednesday, July 4, 2012
The only way out is through
My father and I drove home. I don't think either of us said much in the car. We got to my condo and I headed to the patio for a much needed cigarette. I think I was numb. When I came back inside, I immediately opened up my laptop and put "avascular necrosis" into Google and began my search. My father was doing the same thing on his iPhone. A few minutes later, Dr #3 called and told me to call Dr #4- his office was going to try to get me in that afternoon. When I called, they actually had an appointment open in just an hour. I remember then calling to cancel my hair appointment. It made me very angry to have to do that. I hadn't had my hair touched since all of this madness started. I had dark roots and gray hair which certainly wasn't helping my pudgy-faced steroid look. I hadn't been able to get my hair done because I couldn't sit for that long. But I finally decided that it was time to do something nice for myself and had made the appointment a few days ago. Was it symbolic that I now had to cancel?
For 45 minutes, my dad and I quickly received an online education about avascular necrosis, or AVN. It was not common. It usually affected men more than women. Known causes are excessive alcohol intake, and long-term high-dose steroid use. About 35% of cases are idiopathic- no known cause. I was a drug addict, but I did not have excessive alcohol intake, and the steroids I had over the past few months, while it was a lot, wasn't long-term or high dose. As far as treatments- well there weren't much. AVN turns out to be a very challenging disease because there is no medical management, and the surgical interventions vary greatly in their success rates. There is core decompression, bone resurfacing, bone grafting (transplant)... The only "successful" treatment is a total hip replacement (THR). "Successful" because it removes the dead bone completely and replaces the joint with a prosthesis. But even that doesn't fix the problem for good, because the materials used for THRs wear out over time. The younger you are, theoretically, the more revisions you will need. The less impact you put on the artificial hips, the longer they last. So depending on how long you want your new hips to last, your high impact activity may be limited.
An hour later we were in Dr #4's office. He was loud and a bit arrogant. But it didn't bother me. My dad was a surgeon, and I had worked with this personality for years. I was actually quite impressed with the time he spent with us. He explained that my MRI showed that my left hip had about 35-40% necrosis and the right side had 30-35%- both of which are pretty large lesions. The regular x-rays showed that the femoral heads were still the correct shape- rounded. When the necrosis gets bad enough, the bone will eventually collapse, which will cause more pain and difficulty with range of motion and weight bearing. Once the bone collapses, the only choice is to do a THR. The choice about other treatments- to avoid or postpone the need for THR- is the controversial one. In his opinion, none of the other interventions had a good enough success rate to justify trying. Basically, his thought was that when the pain got unbearable, the best option would be to do the THR. At this time, this made sense to me.
Dr #4 was concerned about a number of things. First, I was a mess in his office. I was crying and very emotional. I had already been depressed, this certainly didn't help my outlook at this point. He observed this and said that I needed time to let this all sink in and get emotionally prepared for the surgery and recovery. I was a little bit embarrassed- yes I was pretty shaken up. But I am not by any means a weak person in general. At this moment in time, I appeared to be falling apart. I remember him doing something that was pretty powerful- he grabbed hold of my hands and looked me in the eyes and said "Look- this isn't cancer and it isn't a massive heart attack. You won't die from this. And young patients with THRs live as full a life as they did before the surgery."
Second, the pain issues. I was still having sciatica pain. He was concerned that if I had this after surgery, it might negatively affect my recovery and make physical therapy difficult. Third, he knew that I had back surgery just a month and a half ago and said it would be better to wait a bit before jumping into another surgery so soon. Fourth, my smoking. It was absolutely imperative that I quit. Nicotine constricts blood vessels. It could be speculated that my 20+ years of smoking contributed to the AVN- by repeatedly constricting my blood vessels, it could have affected the blood supply to my hips. But more importantly, good healing needs good blood flow- especially when my bone will need to heal well around the implants. In addition to the healing aspect, there are other concerns with my lungs and anesthesia, and the formation of blood clots.
He wanted to see me in another 6 weeks, with the goals to be that in this time period, my sciatica would be improved, I would be mentally prepared to go forward with surgery, and that I would quit smoking. I felt this was all reasonable and made good sense.
Driving home, I felt absolutely exhausted. It was so much new information. I was scared. I was worried. All I wanted to do was smoke a pack of cigarettes. Quitting smoking seemed almost impossible. I was overwhelmed by all of these emotions. I had these horrible visions of me being grossly overweight and wheelchair bound and living in a trailer with a dozen cats on a disability income. Which was totally ridiculous. I went home and got in bed. I didn't really talk to anyone for a few days. I needed to cry and yell and throw things. I needed to go through the emotions. It was sort of like Elisabeth Kubler Ross's stages of grief. This wasn't easy for me. I am a drug addict. For years, I coped with uncomfortable feelings by taking drugs to mask them. I numbed out. That wasn't an option for me anymore. I had to reach down deep, and use the coping mechanisms I had learned since becoming clean. This was the hardest thing I had gone through since then, and it was going to be a hell of a challenge.
Tuesday, July 3, 2012
Dead bone
My father had come with me today to see Dr #3. It was a few days before my 44th birthday. I was getting the results of my follow-up MRIs- of my lumbar spine and of my pelvis. The pelvis MRI was done just in case we had missed something and the pain that I was still experiencing after surgery was coming from some other place besides my spine.
The doctor told me that my spine looked fine and that the surgical area was healing as it should be- there was no re-herniation of the disc. But the MRI of my pelvis as not normal. He held up the actual MRI to the viewing box and pointed to some white-ish areas in the heads of both femurs- the "ball" of the ball and socket hip joint. He said that these areas were basically dead bone- that I had "bilateral (both sides) avascular (no blood supply) necrosis (dead bone)." I knew that this was bad. I was a nurse. Any time you have dead bone it's bad. And when it is in the most weight bearing joint of your body, it's really bad. I am pretty sure that I went pale as the blood drained out of my face. I know that the room suddenly looked weird to me- as if I were watching myself. I remember looking at my father, who's stunned face matched how I felt inside. It all made horrible sense to me now- why I had pain still, why it was in my hip, why the surgery didn't help...It's ironic how getting news like this, while devastating, also brings relief. Relief that there was a reason, a medical diagnosis, a significant medical diagnosis, that was causing my pain. It wasn't in my head. I wasn't crazy. The pain I felt was real.
I am a nurse. And I knew what the diagnosis meant, medically. I had taken care of many people with hip dislocations, and understood that these patients needed their hips reduced (put back into joint) in a timely matter. Otherwise the blood supply to the bones would be impaired and cause bone death- avascular necrosis. But I was an ER nurse and that was the extent of my knowledge about the diagnosis. The only thing I remember, sitting in that office, was knowing enough to ask the doctor "I am going to lose my hips, aren't I?" He looked down, and then sort of shrugged and said "Maybe."
I don't remember too much more of what we talked about, except that this was something we had to deal with right away. He wanted me to see a hip specialist the next day. His partner was one, but was on vacation for another two weeks. So he told me that he was going to call another, we'll call him Dr #4, and try to get me an appointment as soon as possible. We also discussed pain management. At this point, even before the bad news, I was getting worried about the pain and amount of percocet I was still needing. I was now taking a number of powerful medications that were all prescribed by different doctors. I wanted one doctor to oversee all of these medications, and make sure what I was taking was safe, especially given my addiction history. I was not going to be a martyr and forego pain medicine, but I wanted to do it in the safest way possible, with a doctor who understood addiction. Dr #3 gave me the name of someone he trusted.
I remember us joking a little bit as we left. This doctor was, and had been, very kind. I could tell he was extremely sympathetic to my situation and to the pain I was in. The laughter we shared was about the fact that we knew he was relieved that I was no longer his "problem patient." He said that as soon as they got in touch with the hip doctor, they would call me.
As we exited the doctor's office building, I looked up at the sky and said aloud "Thanks a lot. Like you haven't thrown enough crap at me already." There were tears now. And I was scared. I am usually pretty good at accepting what I cannot control these days. But on that day, I had had it and frankly I was pissed off at my higher power. You know that saying "Whatever doesn't kill you makes you stronger?" I was (still am) SO sick of hearing that! (Thank you very much, Kelly Clarkson, for putting the phrase I hate the most to music that has topped the charts, by the way...) I am as strong as I want to be right now. But what I want and what I get are two very different things. There are things in my life that happened to me because of my poor choices, I accept that. And then there are things that happen, that simply JUST HAPPEN. It makes no sense to me right now, I can't see a reason for it, or find my part in it. But I have faith that someday I will have a better understanding. I will be able to appreciate this experience. There will be gifts in all of this. It may not be clear to me now, but I have faith that it will be revealed to me when I am ready to hear it.
But that day, I was pissed off, scared, and anxious about what was to come.
The doctor told me that my spine looked fine and that the surgical area was healing as it should be- there was no re-herniation of the disc. But the MRI of my pelvis as not normal. He held up the actual MRI to the viewing box and pointed to some white-ish areas in the heads of both femurs- the "ball" of the ball and socket hip joint. He said that these areas were basically dead bone- that I had "bilateral (both sides) avascular (no blood supply) necrosis (dead bone)." I knew that this was bad. I was a nurse. Any time you have dead bone it's bad. And when it is in the most weight bearing joint of your body, it's really bad. I am pretty sure that I went pale as the blood drained out of my face. I know that the room suddenly looked weird to me- as if I were watching myself. I remember looking at my father, who's stunned face matched how I felt inside. It all made horrible sense to me now- why I had pain still, why it was in my hip, why the surgery didn't help...It's ironic how getting news like this, while devastating, also brings relief. Relief that there was a reason, a medical diagnosis, a significant medical diagnosis, that was causing my pain. It wasn't in my head. I wasn't crazy. The pain I felt was real.
I am a nurse. And I knew what the diagnosis meant, medically. I had taken care of many people with hip dislocations, and understood that these patients needed their hips reduced (put back into joint) in a timely matter. Otherwise the blood supply to the bones would be impaired and cause bone death- avascular necrosis. But I was an ER nurse and that was the extent of my knowledge about the diagnosis. The only thing I remember, sitting in that office, was knowing enough to ask the doctor "I am going to lose my hips, aren't I?" He looked down, and then sort of shrugged and said "Maybe."
I don't remember too much more of what we talked about, except that this was something we had to deal with right away. He wanted me to see a hip specialist the next day. His partner was one, but was on vacation for another two weeks. So he told me that he was going to call another, we'll call him Dr #4, and try to get me an appointment as soon as possible. We also discussed pain management. At this point, even before the bad news, I was getting worried about the pain and amount of percocet I was still needing. I was now taking a number of powerful medications that were all prescribed by different doctors. I wanted one doctor to oversee all of these medications, and make sure what I was taking was safe, especially given my addiction history. I was not going to be a martyr and forego pain medicine, but I wanted to do it in the safest way possible, with a doctor who understood addiction. Dr #3 gave me the name of someone he trusted.
I remember us joking a little bit as we left. This doctor was, and had been, very kind. I could tell he was extremely sympathetic to my situation and to the pain I was in. The laughter we shared was about the fact that we knew he was relieved that I was no longer his "problem patient." He said that as soon as they got in touch with the hip doctor, they would call me.
As we exited the doctor's office building, I looked up at the sky and said aloud "Thanks a lot. Like you haven't thrown enough crap at me already." There were tears now. And I was scared. I am usually pretty good at accepting what I cannot control these days. But on that day, I had had it and frankly I was pissed off at my higher power. You know that saying "Whatever doesn't kill you makes you stronger?" I was (still am) SO sick of hearing that! (Thank you very much, Kelly Clarkson, for putting the phrase I hate the most to music that has topped the charts, by the way...) I am as strong as I want to be right now. But what I want and what I get are two very different things. There are things in my life that happened to me because of my poor choices, I accept that. And then there are things that happen, that simply JUST HAPPEN. It makes no sense to me right now, I can't see a reason for it, or find my part in it. But I have faith that someday I will have a better understanding. I will be able to appreciate this experience. There will be gifts in all of this. It may not be clear to me now, but I have faith that it will be revealed to me when I am ready to hear it.
But that day, I was pissed off, scared, and anxious about what was to come.
Thursday, June 28, 2012
Surgery (the first one)
By now it was the end of January. This had all started in November. I had my appointment with Dr #3- the third back specialist.
I brought my dad to this appointment. I respect my dad's opinion and I wanted someone else there to ask the right questions and remember what he said. I explained what had been going on with me since I been injured, and we reviewed my MRI and xrays. After a good discussion, this doctor felt that the next step should be surgery. He suggested that he would do a microdiscectomy, to remove the part of the disc pressing on the nerve root. He agreed that I may have nerve pain that continues for a few months after surgery, but reasoned that I have had pain for such a long time anyway, that it's worth doing. He would do the surgery at an outpatient surgery center- it was a pretty quick procedure. I would be walking right afterward and home that night.
I was so happy to be having surgery. It's not that I wanted to be cut open- don't get me wrong. But for so long I had been struggling with everyday pain. The worst part for me was not knowing what would be happening. I am not a control freak, but I do like to know somewhat what to expect or what will happen. A lot of people struggle with this, but addicts have an especially tough time with this. We spend a lot of time and energy trying to manipulate people and things around us, with the false belief this will enable us to control our world. For the past three months, I had absolutely no control over what was happening to my body. I had no idea how long it would last, or what would be happening in my life in relation to it all. So for me, surgery appeared to be (hopefully) the beginning to the end of all of this. I had faith that this would fix the problem and I would be on the road to recovery and get back to living.
Surgery was February 17. It went fine. After the surgery, Dr #3 did tell us that the nerve root looked very red and inflamed, so I should expect to still have pain for a while (possibly 2-6 months!). When I was able to walk to the bathroom and my pain was somewhat controlled, I was discharged home. I got a large back brace to wear. I was told no twisting or bending. The overall pain wasn't too bad, but certain positions were very painful. I could not sit up in the beginning- as time went on I was able to sit for longer and longer periods of time. Sitting to go to the bathroom was the worst. I used a lot of ice, and took the percocet Dr #3 prescribed when I needed it. I was still very worried about my using narcotics, and in the beginning I was trying to hold out and not take them. My family actually had to remind me of the right way to take pain meds: keep a steady level of them in your body, so take them at evenly spaced intervals so you don't get behind the pain and have to play catch up. Things I have told thousands of patients over the years...but I was hesitant. The last thing I needed was to get hooked on opiates. Slowly but surely the surgical pain went away and I was able to return to the level of activity I was at before the surgery.
Four weeks after surgery, I still had pain. It was getting better in my lower leg, but I still had pain, bad pain, in my hip and thigh and knee and shooting down the back of my thigh. I couldn't sit or flex my hip without pain. It seemed to be activity related- the more I was up on my feet and moving around, the more it hurt. By the end of the day I the pain was unbearable. The longer I was flat, the better. But then I was always falling asleep- because I was laying down most of the time. And I am one of those people that the percocet seemed to have an opposite effect on in terms of sleep- it wired me! I spent many nights wide awake (good thing I'm a Law and Order fan!). I tried to get into a daytime "schedule" to at least busy my mind, to give my day some structure. The internet and my laptop became my best friends. I started reading again. I even started knitting scarves. And I am not the knitting type...
At my 4 week post-op appointment, Dr #3 saw how much pain I was in. I could barely sit (and I had to wait in his waiting room for an hour before seeing him!). We decided to repeat the back MRI to make sure everything was healing right and that I had not re-herniated the disc. My dad was with me again, and we both asked the doctor to order an MRI on my pelvis as well. We wanted to make sure that there wasn't something going on below my back that could be causing the pain. He agreed.
A week later I had both of the MRI's and another week later I was back in Dr #3's office. This time my appointment was first one of the day, so we did not have to wait as long to be seen. I had brought my dad along again, Good thing I did, because I was about to have my world turned upside down.
I brought my dad to this appointment. I respect my dad's opinion and I wanted someone else there to ask the right questions and remember what he said. I explained what had been going on with me since I been injured, and we reviewed my MRI and xrays. After a good discussion, this doctor felt that the next step should be surgery. He suggested that he would do a microdiscectomy, to remove the part of the disc pressing on the nerve root. He agreed that I may have nerve pain that continues for a few months after surgery, but reasoned that I have had pain for such a long time anyway, that it's worth doing. He would do the surgery at an outpatient surgery center- it was a pretty quick procedure. I would be walking right afterward and home that night.
I was so happy to be having surgery. It's not that I wanted to be cut open- don't get me wrong. But for so long I had been struggling with everyday pain. The worst part for me was not knowing what would be happening. I am not a control freak, but I do like to know somewhat what to expect or what will happen. A lot of people struggle with this, but addicts have an especially tough time with this. We spend a lot of time and energy trying to manipulate people and things around us, with the false belief this will enable us to control our world. For the past three months, I had absolutely no control over what was happening to my body. I had no idea how long it would last, or what would be happening in my life in relation to it all. So for me, surgery appeared to be (hopefully) the beginning to the end of all of this. I had faith that this would fix the problem and I would be on the road to recovery and get back to living.
Surgery was February 17. It went fine. After the surgery, Dr #3 did tell us that the nerve root looked very red and inflamed, so I should expect to still have pain for a while (possibly 2-6 months!). When I was able to walk to the bathroom and my pain was somewhat controlled, I was discharged home. I got a large back brace to wear. I was told no twisting or bending. The overall pain wasn't too bad, but certain positions were very painful. I could not sit up in the beginning- as time went on I was able to sit for longer and longer periods of time. Sitting to go to the bathroom was the worst. I used a lot of ice, and took the percocet Dr #3 prescribed when I needed it. I was still very worried about my using narcotics, and in the beginning I was trying to hold out and not take them. My family actually had to remind me of the right way to take pain meds: keep a steady level of them in your body, so take them at evenly spaced intervals so you don't get behind the pain and have to play catch up. Things I have told thousands of patients over the years...but I was hesitant. The last thing I needed was to get hooked on opiates. Slowly but surely the surgical pain went away and I was able to return to the level of activity I was at before the surgery.
Four weeks after surgery, I still had pain. It was getting better in my lower leg, but I still had pain, bad pain, in my hip and thigh and knee and shooting down the back of my thigh. I couldn't sit or flex my hip without pain. It seemed to be activity related- the more I was up on my feet and moving around, the more it hurt. By the end of the day I the pain was unbearable. The longer I was flat, the better. But then I was always falling asleep- because I was laying down most of the time. And I am one of those people that the percocet seemed to have an opposite effect on in terms of sleep- it wired me! I spent many nights wide awake (good thing I'm a Law and Order fan!). I tried to get into a daytime "schedule" to at least busy my mind, to give my day some structure. The internet and my laptop became my best friends. I started reading again. I even started knitting scarves. And I am not the knitting type...
At my 4 week post-op appointment, Dr #3 saw how much pain I was in. I could barely sit (and I had to wait in his waiting room for an hour before seeing him!). We decided to repeat the back MRI to make sure everything was healing right and that I had not re-herniated the disc. My dad was with me again, and we both asked the doctor to order an MRI on my pelvis as well. We wanted to make sure that there wasn't something going on below my back that could be causing the pain. He agreed.
A week later I had both of the MRI's and another week later I was back in Dr #3's office. This time my appointment was first one of the day, so we did not have to wait as long to be seen. I had brought my dad along again, Good thing I did, because I was about to have my world turned upside down.
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