the yearly update; Chronic pain, surgery, and life.
I realized it's been over a year since I last updated. I'm not super active on FB either. I try to keep my updates benign and bland because I have a ton of family on there and I always end up offending someone. There's been just too much bad going on for me to try and update. That will get better, soon, I hope :)
Over a year ago (Feb 2014), I had a bad hip day. They still happen, from time to time. I'll be sore for a day, stay off my feet, and then get better in a day or two. It was a Friday, and Jorge was off work that day because I remember texting him, saying, "I'm having a bad hip day." and he replied, "Don't worry, we'll take it easy this weekend." and we canceled our date plans. Well, I didn't get better, I got worse. Around mid-week, I called my MD, the lovely doctor who helped me with my anxiety, and she told me to come in right away. She didn't dismiss me, she didn't discount my pain, and she didn't accuse me of lying; it was the first time I'd discussed my hip pain with a doctor and been treated like an adult.
In total, I saw:
My primary doctor, who ordered an X-ray and blood work, which came back with nothing on it.
A wonderful physical therapist, who tried to help me but couldn't make any significant progress with me.
An asshole orthopedic who was incredibly dismissive of me and my pain. He gave me a pair of crutches, threw some medications at me, ordered an MRI on my right hip but decided nothing on it was significiant. There was, however, a bone spur on the ball of my bone in the joint, but ortho says that is not causing my pain. Gave me a coritsone injection. When that did nothing, he refused to see me again and told me I needed to go see a pain management doctor. Around this time, I finished my physical therapy sessions, with no real progress. This is August of 2014.
A pain management doctor. He ordered an MRI of my spine, which showed nothing wrong. He did a series of nerve block injections, with varying degrees of success (some pain relief for a few weeks, or none at all, but nothing lasts). At this point, I am using a forearm crutch about 50% of the time. I can't do long walks, car rides hurt the most, sitting at work is hard.
New physical therapist in October of 2014. Less wonderful than the first. We do a lot of ROM with no real change. She is upset with me when I report that I don't feel any improvement. LIKE IT'S MY FAULT. By Nov of 2014, I am using a forearm crutch 90% of the time. I am on tramadol (for pain), acetaminophen/codeine (for pain), meloxicam (NSAID), gabapentin (for potential nerve pain, which was my pain doctor's best guess), and an anti-depressent because I was at the point where I genuinely wanted to kill myself just to stop all the pain.
In rapid succession, I see: a podiatrist, two chiropractors, and a neurologist. More tests, more x-rays. All the tests turn up negative. I remember, the nurse for the neurologist calling me with my test results, cheerily informing me that the test came back negative, and I start to cry on the phone. She doesn't understand -- a negative test is usually a good thing. I sob and tell her I just want to know what's wrong with me. I also start seeing a pyschologist. I wanted someone who dealt with chronic pain, but struggled to find a specalist. They stick me with a nice lady, but someone who didn't quite help me with what I needed.
December of 2014, I see my pain management doctor again. I tell him, no more injections. They are a costly band-aid. I am 29 years old, not an 80 year old with arthritis/OA/whatever degenerative disease. Every test is coming back negative. THERE HAS TO BE A REASON FOR MY PAIN. I know how our healthcare industry treats geriartic patients with chronic pain problems. I read their nursing notes, their PT notes, their doctors notes every day. I am NOT that patient. I want a diagnosis, not to keep funneling money into treatments that ultimately do nothing. He agrees. He orders an MRI of my hip, with contrast. He fights with my insurance company on getting them to approve it. They don't understand why I need it -- but they are perfectly happy continuting to pay for treatments, what the hell? I have the MRI done. I remember, lying in the MRI tube, crying, praying that it would finally discover what's wrong.
December 31st, 2014. I am at my in-laws house for New Years Eve dinner. I am clutching my phone all day, waiting on a call from my doctor's office with the results. Around 5 PM, I get a call. I run into the laundry room to take the call in private. It's my pain doctor himself. There is a bad labral tear. The labrum is the cartilege that cushions the ball and socket of the joint. His best guess is that the bone spur (THE INSIGFICIANT BONE SPUR, REMEMBER) has been rubbing the labrum and caused the tear. He tells me that the next step is to see an orthopedic doctor. I will most likely need surgery to repair it. I get off the phone and cry my eyes out. Jorge comes into the laundry room and we just hold each other for awhile, relieved. I don't have any New Year's Resolution other than one: GET BETTER.
Jan, 2015. Tests results, MRI reports, X-rays, everything in hand, I call the IL Bone and Joint Institue. (Because, like fuck I'm going back to the original ortho). I schedule the appointment. On Jan 5, I see the ortho. After some bullshit with the office scheduling me with a wrong doctor (He was not a surgeon, and gave me attitude about why I'd schedule an appointment to see him; I get mad and tell him that his office staff knew my case, knew I would be a surigical, and scheduled me for the wrong doctor.) They send me three towns over to another location, where I meet with a wondeful orthopedic surgeon. He reviews my case, runs new X-rays to confirm what my pain doctor has reported, and agrees that surgery is the best course of action for me. I've already done the conservative treatments (meds, injections, PT, etc), so it's time for the knife. Jorge and I discuss, and agree that we want the earliest possible surgery date. We make an appointment for 1/28. I cry a lot because I was planning a surprise party for Jorge's 30th (on the 31st). He consoles me and tells me there will be better times for celebrating, and this was more important.
Rest of Jan: I have to discontinue my NSAID in preparation for the surgery, as it's a blood thinner and a no-no for surgery. Don't get me wrong, not knowing why you're in chronic pain, doubting yourself, thinking you're crazy, thinking about killing yourself, worrying that you will never have a normal life -- that was the worst part of this whole ordeal. But discontinuing the NSAIDs made my pain about 20% worse. Of course, this makes sense. Basically, the torn bits of the labrum are free floating in joint, irritiating the muscle fiber of my thigh. The NSAID reduced this inflammation. Without it, I can barely walk. I am on my crutch 100% of the time. I am in agony.
Two days before my surgery, on 1/28. I get a call from the orthopedic's office. They have to push back my surgery a week, because my surgeon's wife just had a baby. This also means another week without my NSAID. I cry ridiculously, and reschedule my surgery for 2/4. Jorge and I quietly celebrate his 30th and try to prepare for my surgery.
Feb 4th: I go under the knife. The surgery was a hip arthscopy, in which they'd do 2 incisions, on for the camera, one for the medical instruments. The plan is to take the bits of my frayed labrum, and basically pin it back up over the socket. The medical staples would dissolve, and the labrum should heal attached to the bone. But once they get in there, they discover that the damage was much worse than expected. An entire chunk of the labrum has entirely torn off, and has been free-floating in the joint (which is why I've been in so much pain in the muscle). There is not enough of the remaining cartilege to pin it back up. The best they can do is 1) file down the bone spur to prevent it from rubbing on the labrum again and 2) create grooves where the cartilege should be, to force my body to re-grow new caritilege over that spot. New cartilege is not as strong as the cartilege you are born with, but it is better than bone-on-bone. There is some minor arthitis in the joint.
So, to pause for a moment. When I was kid, and had the first case of hip pain, this is what was happening: The bone spur was rubbing on the cartilege, eventually fraying it. While frayed, I would be in pain. Eventually (and in most causes of labral fraying) it healed itself and I would feel better. So, the first case, when I was 16, the fraying happened and I recovered on my own. Over the years, every few months or so, I'd have hip pain, I would rest, it would get better. What was happening, is I was fraying the labrum, healing, re-fraying, healing, over and over again, over 14 years. In Feb 2014, I finally frayed the labrum so badly that it tore off and was free floating in the joint. This is an atypical presentation of a labral tear. Pain does not usually radiate so far down the top of the thigh, like mine did. I am also not an athelete, so none of the doctors over the years thought to check.
Back to my surgery: I wake up, they explain to me what happened while I was under and how the game plan had to change. Jorge comes in to see me. The first thing I say to him, as I'm coming out of my stupor is "I'm not wearing any panties." I have a hip brace, an ice pump and a CPM machine. They dress me and send me home. For 3 weeks, I use the CPM machine for 6 hours a day. I start physical therapy with a new (AND AWESOME) PT the Monday after my surgery. For 3 weeks, I can't bear any weight and use two crutches to get around. After 3 weeks, I lose the CPM, the crutches, and I start walking a little. After 6 weeks, I lose the brace (FINALLY). I can shower on my own now.
Which brings us to now. Sitting normally in a chair is hard. I sit reclined on a bed, with a wedge and lots of pillows. It's hard. I had a set back this week, where the muscle in my hip is stiff and shortened from sitting too long. Extending my leg makes it pinch badly. But I'm getting better.
Every other week or so, my PT asks me, "Are you glad you had the surgery? Is the pain better than before?" I always answer, "YES!!" Recovery is hard, but chronic pain, with no reason, no relief, is worse. The pain is bad, sure, but it's different. It's managable. I am still on some serious pain meds (Norco) but it's a fraction of what I used to take. The day I got my diagnosis was the day I stopped having thoughts about hurting/killing myself.
Although I didn't write much about Jorge through all of this, he has been amazing. He has taken care of me, waited on me, managed the house all on his own, dealt with work, comforted me when I needed it, and has been wonderful. I don't have the right words to say how much he saved me. He pushed me to keep fighting when my doctors wanted to quit, when I wanted to quit, when work was being shitty about my condition, when our FRIENDS were being shitty about my condition. I should have been used to people (doctors, friends, family) not believing me when I say how much pain I'm in, but it still hurts when I hear down the grapevine about how Jenny is exaggerating her pain to get out of X. He has defended me every step.
I learned a lot about myself over the last year, and about the kind of people I want in my life, and the kind of job I want to have. There's a lot of work waiting for me once I'm recovered (about 6 months, I should be 90-100% recovered). But I am excited to make new, positive changes in my life.
I thought about locking this journal entry, because it's so personal, but decided to leave it public. Chronic pain is incredibly isolating. Especially when it's a mystery, especially when you feel like everyone has given up on you. But if you're a stranger (or not a stranger) and you feel alone in your pain, I'm here. I understand. Talk to me, because I get it.
Over a year ago (Feb 2014), I had a bad hip day. They still happen, from time to time. I'll be sore for a day, stay off my feet, and then get better in a day or two. It was a Friday, and Jorge was off work that day because I remember texting him, saying, "I'm having a bad hip day." and he replied, "Don't worry, we'll take it easy this weekend." and we canceled our date plans. Well, I didn't get better, I got worse. Around mid-week, I called my MD, the lovely doctor who helped me with my anxiety, and she told me to come in right away. She didn't dismiss me, she didn't discount my pain, and she didn't accuse me of lying; it was the first time I'd discussed my hip pain with a doctor and been treated like an adult.
In total, I saw:
My primary doctor, who ordered an X-ray and blood work, which came back with nothing on it.
A wonderful physical therapist, who tried to help me but couldn't make any significant progress with me.
An asshole orthopedic who was incredibly dismissive of me and my pain. He gave me a pair of crutches, threw some medications at me, ordered an MRI on my right hip but decided nothing on it was significiant. There was, however, a bone spur on the ball of my bone in the joint, but ortho says that is not causing my pain. Gave me a coritsone injection. When that did nothing, he refused to see me again and told me I needed to go see a pain management doctor. Around this time, I finished my physical therapy sessions, with no real progress. This is August of 2014.
A pain management doctor. He ordered an MRI of my spine, which showed nothing wrong. He did a series of nerve block injections, with varying degrees of success (some pain relief for a few weeks, or none at all, but nothing lasts). At this point, I am using a forearm crutch about 50% of the time. I can't do long walks, car rides hurt the most, sitting at work is hard.
New physical therapist in October of 2014. Less wonderful than the first. We do a lot of ROM with no real change. She is upset with me when I report that I don't feel any improvement. LIKE IT'S MY FAULT. By Nov of 2014, I am using a forearm crutch 90% of the time. I am on tramadol (for pain), acetaminophen/codeine (for pain), meloxicam (NSAID), gabapentin (for potential nerve pain, which was my pain doctor's best guess), and an anti-depressent because I was at the point where I genuinely wanted to kill myself just to stop all the pain.
In rapid succession, I see: a podiatrist, two chiropractors, and a neurologist. More tests, more x-rays. All the tests turn up negative. I remember, the nurse for the neurologist calling me with my test results, cheerily informing me that the test came back negative, and I start to cry on the phone. She doesn't understand -- a negative test is usually a good thing. I sob and tell her I just want to know what's wrong with me. I also start seeing a pyschologist. I wanted someone who dealt with chronic pain, but struggled to find a specalist. They stick me with a nice lady, but someone who didn't quite help me with what I needed.
December of 2014, I see my pain management doctor again. I tell him, no more injections. They are a costly band-aid. I am 29 years old, not an 80 year old with arthritis/OA/whatever degenerative disease. Every test is coming back negative. THERE HAS TO BE A REASON FOR MY PAIN. I know how our healthcare industry treats geriartic patients with chronic pain problems. I read their nursing notes, their PT notes, their doctors notes every day. I am NOT that patient. I want a diagnosis, not to keep funneling money into treatments that ultimately do nothing. He agrees. He orders an MRI of my hip, with contrast. He fights with my insurance company on getting them to approve it. They don't understand why I need it -- but they are perfectly happy continuting to pay for treatments, what the hell? I have the MRI done. I remember, lying in the MRI tube, crying, praying that it would finally discover what's wrong.
December 31st, 2014. I am at my in-laws house for New Years Eve dinner. I am clutching my phone all day, waiting on a call from my doctor's office with the results. Around 5 PM, I get a call. I run into the laundry room to take the call in private. It's my pain doctor himself. There is a bad labral tear. The labrum is the cartilege that cushions the ball and socket of the joint. His best guess is that the bone spur (THE INSIGFICIANT BONE SPUR, REMEMBER) has been rubbing the labrum and caused the tear. He tells me that the next step is to see an orthopedic doctor. I will most likely need surgery to repair it. I get off the phone and cry my eyes out. Jorge comes into the laundry room and we just hold each other for awhile, relieved. I don't have any New Year's Resolution other than one: GET BETTER.
Jan, 2015. Tests results, MRI reports, X-rays, everything in hand, I call the IL Bone and Joint Institue. (Because, like fuck I'm going back to the original ortho). I schedule the appointment. On Jan 5, I see the ortho. After some bullshit with the office scheduling me with a wrong doctor (He was not a surgeon, and gave me attitude about why I'd schedule an appointment to see him; I get mad and tell him that his office staff knew my case, knew I would be a surigical, and scheduled me for the wrong doctor.) They send me three towns over to another location, where I meet with a wondeful orthopedic surgeon. He reviews my case, runs new X-rays to confirm what my pain doctor has reported, and agrees that surgery is the best course of action for me. I've already done the conservative treatments (meds, injections, PT, etc), so it's time for the knife. Jorge and I discuss, and agree that we want the earliest possible surgery date. We make an appointment for 1/28. I cry a lot because I was planning a surprise party for Jorge's 30th (on the 31st). He consoles me and tells me there will be better times for celebrating, and this was more important.
Rest of Jan: I have to discontinue my NSAID in preparation for the surgery, as it's a blood thinner and a no-no for surgery. Don't get me wrong, not knowing why you're in chronic pain, doubting yourself, thinking you're crazy, thinking about killing yourself, worrying that you will never have a normal life -- that was the worst part of this whole ordeal. But discontinuing the NSAIDs made my pain about 20% worse. Of course, this makes sense. Basically, the torn bits of the labrum are free floating in joint, irritiating the muscle fiber of my thigh. The NSAID reduced this inflammation. Without it, I can barely walk. I am on my crutch 100% of the time. I am in agony.
Two days before my surgery, on 1/28. I get a call from the orthopedic's office. They have to push back my surgery a week, because my surgeon's wife just had a baby. This also means another week without my NSAID. I cry ridiculously, and reschedule my surgery for 2/4. Jorge and I quietly celebrate his 30th and try to prepare for my surgery.
Feb 4th: I go under the knife. The surgery was a hip arthscopy, in which they'd do 2 incisions, on for the camera, one for the medical instruments. The plan is to take the bits of my frayed labrum, and basically pin it back up over the socket. The medical staples would dissolve, and the labrum should heal attached to the bone. But once they get in there, they discover that the damage was much worse than expected. An entire chunk of the labrum has entirely torn off, and has been free-floating in the joint (which is why I've been in so much pain in the muscle). There is not enough of the remaining cartilege to pin it back up. The best they can do is 1) file down the bone spur to prevent it from rubbing on the labrum again and 2) create grooves where the cartilege should be, to force my body to re-grow new caritilege over that spot. New cartilege is not as strong as the cartilege you are born with, but it is better than bone-on-bone. There is some minor arthitis in the joint.
So, to pause for a moment. When I was kid, and had the first case of hip pain, this is what was happening: The bone spur was rubbing on the cartilege, eventually fraying it. While frayed, I would be in pain. Eventually (and in most causes of labral fraying) it healed itself and I would feel better. So, the first case, when I was 16, the fraying happened and I recovered on my own. Over the years, every few months or so, I'd have hip pain, I would rest, it would get better. What was happening, is I was fraying the labrum, healing, re-fraying, healing, over and over again, over 14 years. In Feb 2014, I finally frayed the labrum so badly that it tore off and was free floating in the joint. This is an atypical presentation of a labral tear. Pain does not usually radiate so far down the top of the thigh, like mine did. I am also not an athelete, so none of the doctors over the years thought to check.
Back to my surgery: I wake up, they explain to me what happened while I was under and how the game plan had to change. Jorge comes in to see me. The first thing I say to him, as I'm coming out of my stupor is "I'm not wearing any panties." I have a hip brace, an ice pump and a CPM machine. They dress me and send me home. For 3 weeks, I use the CPM machine for 6 hours a day. I start physical therapy with a new (AND AWESOME) PT the Monday after my surgery. For 3 weeks, I can't bear any weight and use two crutches to get around. After 3 weeks, I lose the CPM, the crutches, and I start walking a little. After 6 weeks, I lose the brace (FINALLY). I can shower on my own now.
Which brings us to now. Sitting normally in a chair is hard. I sit reclined on a bed, with a wedge and lots of pillows. It's hard. I had a set back this week, where the muscle in my hip is stiff and shortened from sitting too long. Extending my leg makes it pinch badly. But I'm getting better.
Every other week or so, my PT asks me, "Are you glad you had the surgery? Is the pain better than before?" I always answer, "YES!!" Recovery is hard, but chronic pain, with no reason, no relief, is worse. The pain is bad, sure, but it's different. It's managable. I am still on some serious pain meds (Norco) but it's a fraction of what I used to take. The day I got my diagnosis was the day I stopped having thoughts about hurting/killing myself.
Although I didn't write much about Jorge through all of this, he has been amazing. He has taken care of me, waited on me, managed the house all on his own, dealt with work, comforted me when I needed it, and has been wonderful. I don't have the right words to say how much he saved me. He pushed me to keep fighting when my doctors wanted to quit, when I wanted to quit, when work was being shitty about my condition, when our FRIENDS were being shitty about my condition. I should have been used to people (doctors, friends, family) not believing me when I say how much pain I'm in, but it still hurts when I hear down the grapevine about how Jenny is exaggerating her pain to get out of X. He has defended me every step.
I learned a lot about myself over the last year, and about the kind of people I want in my life, and the kind of job I want to have. There's a lot of work waiting for me once I'm recovered (about 6 months, I should be 90-100% recovered). But I am excited to make new, positive changes in my life.
I thought about locking this journal entry, because it's so personal, but decided to leave it public. Chronic pain is incredibly isolating. Especially when it's a mystery, especially when you feel like everyone has given up on you. But if you're a stranger (or not a stranger) and you feel alone in your pain, I'm here. I understand. Talk to me, because I get it.