Hip Surgery with Dr. Philippon at Steadman Clinic

I am hoping to blog about my recent hip surgery experience on a regular basis. The reason is that there is truly not much information out there for people suffering from what I had, and I happened to stumble across the greatest surgeon in the world (seriously!) for this problem. Otherwise, I might have had my surgery done locally and not had good outcomes. This is a long, detailed post, but I still left out a lot. Please feel free to comment if you have specific questions. Also, if you want the short version: Vail is the place to go for this surgery, the surgery is pretty major, you’ll do a ton of PT, you will have so many restrictions following surgery, so make sure you have tons of help and don’t plan to do anything much outside of home for about three weeks. Taking care of this hip for the first three weeks following surgery is akin to caring for a newborn baby. A baby with colic.

I am a little over one month out from my left hip arthroscopy. To rewind, I was out for a short run on June 1 with my friend, Jo, and her dog, MaeBe. After stopping very briefly, I resumed running and went from curb to road. I did not fall…I just stepped off normally. At that point, I experienced a severe and very, very deep pain in my left hip. It was like nothing I’d ever had before. In retrospect, I had had some very minor tightness in that hip for about a month prior, but it always loosened up with walking/running. Not this time, though. I had no idea what I’d done, but I knew it was very bad. As I was running very low mileage, I couldn’t imagine it was a femoral neck stress fracture, but I was positive it was not muscular. To make a long and frustrating story short: I had an MRI, which turned up normal. I then had an intra articular diagnostic injection, which took away 100% of the pain for 2 hours, indicating the problem was coming from within the joint. I was referred to a hip specialist in Indy, as the one who did the injection thought this was diagnostic for a labral tear. The hip specialist was sure it was a fracture and absolutely not a labral tear, so he ordered ANOTHER MRI, thinking the first one did not pick it up. He felt I was in too much pain and limping too badly for a labral tear. That MRI also came back normal. However, the hip specialist could see a “small anterior labral tear” and ordered PT. I still could hardly walk, folks. He told me that we would consider surgery if 6 months of PT didn’t work, and that it was a simple surgery that only involved cleaning up the labrum.

I happened to be teaching an online PhD course when all this was happening. I mentioned to my students what was going on (I had to miss an in-person meeting when they thought the femur was broken) and, by chance, one of my students said “You need to talk to me. My husband had a labral tear repaired in Indy, but ended up having it revised in CO.” I did talk to her, and then her husband, and found out he had a bad experience in Indy (same surgeon I was seeing) and that the surgery made him worse. He ended up doing a ton of research and found The Steadman Clinic in Vail, CO (www.thesteadmanclinic.com). I talked to him for about an hour, and by the end was convinced this is where I needed to go to see Dr. Philippon, who is the leading surgeon IN THE WORLD in arthroscopic hip surgeries, labral tear repair, and hip impingement repair. He has operated on A Rod (don’t know who that is), Tara Lapinski, the lead ballerina from the NY ballet, a bunch of professional runners, skiiers, etc. This is where pro athletes go for this surgery. You can literally send him your MRI, and he will read it and one of his fellows calls you and tells you if you’ll benefit from surgery or not. I sent off my stuff and got a resounding “YES, you need surgery” about a week later. Note: A normal MRI read by a radiologist, even one certified to read musculoskeletal scans, DOES NOT MEAN YOU DO NOT HAVE A LABRAL TEAR. Mine was missed by two musculoskeletal radiologists, and it ended up being a HUGE tear. If you’re having persistent hip pain, you must have your MRI looked at by a hip specialist/surgeon.Dr. Philippon

However, he has a waiting list. It’s typically 6-9 months, and it happened to be around 6 when I got in the loop, as most people don’t want to have their surgery over the holidays, but I did. I also had to meet my insurance company’s requirements to have PT for 6 months, and also an injection. Everyone at Steadman, as well as my PT, KNEW this stuff was not going to work…but I had to do it anyway. My surgery was scheduled for Nov. 28, and at that point the Steadman team walked me through absolutely everything–how much PT I needed to satisfy the insurance, when I needed the injection, etc. This got a little tricky, as I had to continue to see the Indy-based hip surgeon in order to get the injection. As much as I wanted to “Bye, Felicia” him since I was on Dr. P’s schedule, I couldn’t. I jumped through all the hoops, and my hip never improved (as expected), so surgery was on for 11/28.

Luckily, Dr. Philippon is in my insurance network. However, even if he hadn’t been, I would’ve gone to him anyway. He was published prolifically on this surgery, and he does 15 a week–this is literally all he does. There was some pushing and pulling with my insurance company (they were not satisfied to have the hip surgeons say they saw the labral tear in the progress notes–it had to be in the actual MRI report), but they ended up covering it. The surgery cost $30,000, so I’m glad they did, but I cannot overemphasize that I would’ve spent my savings/gone into debt to go to this particular surgeon had I needed to.

Tim and I flew to Denver two days before surgery, and we drove up to Vail. Vail is at about 10,000 feet. It’s beautiful, but expensive (go for an air BNB instead of a ski lodge), and the air is thin. If you’re having surgery with Dr. P, you will spend about 6-8 hours the day before undergoing testing, meeting with Mark Ryan (Athletic Trainer), Dr. P’s team (PAs and fellows), surgical team’s internal medicine specialist, and all the equipment people (you go home with a lot of equipment). You will also have an MRI. It was a long, exhausting day, and we really did not have time to eat. So, pack snacks for the pre-op day.

During the pre-op day, I learned that, based on this new MRI, my labrum was not just torn–oh, no–it was detached. Basically, more than 1/3 of the anterior portion of the labrum was just hanging there, thus being pinched every time my hip flexed/extended/rotated. This happened because I suffered from significant femoral-acetabular impingement (FAI), both the CAM and pincer types. What this means is that I had two deformities in my hip joint that impinged on my labrum–one was a bump on femoral head, which made it too big, and the other was with the acetabular rim itself–it was too deep and was also impinging. So, I was born with these deformities, which, over the course of time and LOTS of hip flexion from running, eventually popped the labrum right off. That was the severe pain I felt on June 1. So, this was not a running injury. People with FAI are often asymptomatic many years until BOOM, severe hip pain, and those of us with FAI who flex our hips a lot (runners, cyclists, ballerinas, skiiers, ice skaters, tennis players, rowers…) become symptomatic more quickly than people without that flexion. It had nothing to do with my mileage at the time at which I began feeling pain; it was simply the final straw for that hip.

Maybe you’re thinking what I was thinking during my pre-op…so what about the other hip? Well, odds are that it’s deformed also, with the same FAI I have on the left hip. However, besides some limited range of motion, I have no symptoms on that side. There’s a decent chance that that labrum will detach as well, but, until it hurts, there is no use scanning that hip. This is not an easy surgery (I’m about to explain it), so I really, really hope that doesn’t happen to me, but I’m pretty much expecting it. At least I’ll know what it is and where to go next time!

The next morning, I went in for surgery. This was my 10th orthopedic surgery, so I’m used to the pre-op, and I never get nervous. The only difference in this pre-op was that they drew about 200 ml of blood to use for a platelet-rich plasma injection they’d put into my hip before closing to assist with healing (he’s the only surgeon who does this). Also, I got to finally meet Dr. Philippon. For being world-famous and in high demand, he sure is nice, taking his time to describe everything he’s going to do, what else he might have to do, and asking about your goals. He told me my fixed him would not keep me from running. “Your feet might” (I’ve had multiple foot surgeries), “but not this hip.” I met the anesthesiologist, who had me take an oral lyrica (this will be important later), and explained that I’d have an epidural during surgery and would wake up pain free given the epidural. She gave me some Versed. I remember them telling Tim the surgery would be 4-5 hours, then being wheeled into the operating room and turned onto my left side for the epidural. I remember she was struggling to get it, but it didn’t hurt, and that “non-stop” from Hamilton was playing.

The next thing I remember is waking up in 10/10 pain, hearing myself moaning. I was completely confused, thinking maybe I was still in surgery and was waking up before I was supposed to. There was  frantic nurse at my bedside, and she was pushing Fentanyl. I was coughing violently. Tim was there, and I told him I wanted to die and that I felt like there was a bear trap on my left hip. I’ve been in a lot of pain a lot of times, and this was only second to child birth. Dr. P came in and I remember him being shocked that I was in so much pain. The nurse said to him, “I don’t think her epidural is working.” No shit! “You are feeling everything I did in there.” Yes. Yes, I was. The nurse continued to push Fentanyl, telling me that she was calling an anesthesiologist to fix my epidural. My right leg (the non-surgical one!) was numb, but the left was not. I suffered for about another hour before an anesthesiologist came and slightly moved the epidural, giving me instant relief. I had to spend the night in the hospital. I coughed and coughed and coughed, and was generally miserable. “I think you have aspirated,” my nurse said. I didn’t think much about it, but I coughed all night long. My epidural had to be shut off at midnight (a bit of a bummer since it didn’t start working til about 9 pm!), and I had to be up at 7 am to be on the bike.

At 7 am, I was up to the bathroom on my crutches and in my hip brace, still coughing, and 20 minutes later was somehow on a stationary bike wearing paper shorts. One of Dr. P’s PA’s met with me, explaining all the procedures I had done on my hip. I actually had three areas of impingement–the femoral head (CAM impingement), the acetabular rim (pincer impingement), and the AIIS (anterior inferior iliac spine) was a third area of impingement that can only be diagnosed during surgery–he flexed my hip and watched that part of the pelvis come down and impinge the labrum. In all, I had 11 procedures done, and my hip was in traction for about 64 minutes. Here’s what I had done: osteoplasty of the femoral head and acetabular rim, as well as decompression of the AIIS (basically, he shaved down these bones to get rid of the deformities, thereby preventing impingement from happening again in the future), labral debridement and anchoring (cleaning up the frayed labrum but preserving the chunk that had popped off, and stitching it back to the hip capsule using three bone anchors), capsular plication (improving stability of the capsule, basically enhancing the suction of the ball into the joint), synovectomy (removal of the inflamed lining of the hip joint), ligamentum teres debridement and thermal repair (the ligament attaching my femur into the hip joint was partially torn, so he fixed that), and PRP injection into the joint (using blood drawn pre-operatively).

So, my hip was a mess. Years and years of walking, running, and sitting on a hip that was constantly impinging on itself left me with not only a labral tear, but an unstable joint, inflamed joint lining, and a torn ligament. I have run thousands and thousands of miles on this hip! I was definitely headed for a hip replacement had I not had this repaired.

Once the surgery was over, the real work began. I had PT twice a day while in Vail, beginning the morning after surgery. I also had exercises to do at my air BNB between PT, and I was cleared to do aquatic therapy within three days of therapy. It is extremely busy–you are recovering from major hip surgery, taking narcotics, but there is not much time for rest. The PTs are incredible. I think it is most important to discuss the very first PT session. You will be sat on the bike in your paper shorts (alongside the other people who had surgery the same day as you), and told to bike 10 minutes forward and backward with ZERO resistance. You must sit straight up, as you aren’t allowed to flex your hip. You will do this 20 minutes of biking twice a day for six weeks.

Next, you walk on your crutches to a PT table where your spouse/care giver/helper will be taught about all your restrictions and how to circumduct your leg. The first three weeks of recovery are INTENSE, and this is due to the extreme movement restrictions and range of motion exercises that must be done to prevent scar tissue.  Here are the main restrictions beginning day after surgery: you cannot sit at 90 degrees for 2 weeks (ever try riding in a car, or a plane?!), you must wear your hip brace for 17 days (while ambulating), absolutely no extension of your hip for 17 days, no external rotation of your hip for 21 days, no use of your hip flexors for 14 days, and no lying on your abdomen for six weeks. Basically, this means that your leg has to be in the neutral position at all times, and you aren’t allowed to lift your own leg (someone has to lift it for you)….which leaves you generally helpless is most situations outside of watching Netflix. You will have to have a theraband around your ankles to prevent external rotation any time you are sitting or lying. So, trust me, it’s easier to just stay home for three weeks than to try to maintain all these restrictions in public places. You also must have your leg circumducted at a 45 degree angle four times a day for 10 minutes–40 minutes a day. You cannot do this by yourself. While you’re in Vail, the PT will do it twice a day, and your helper has to do it the other two times per day. Helper must not allow you to go into flexion or external rotation during this. It is stressful! The circumduction keeps up 40 minutes a day for 21 days. You will do so much circumducting, and your helper might complain, but you have to do it. It is the best way to prevent scar tissue. You must also have your leg in a CPM (continuous passive movement) machine for 6-8 hours a day for four weeks. This machine is huge, and it constantly flexes your knee passively. I slept in mine. Of course, you can’t get in and out of it by yourself, so this is another thing for your helper to have to do.

I’m just going to put it out there that this surgery is stressful on a relationship. My husband was by my side the entire surgery and recovery, and supportive of me getting it, but we had legit fights over circumducting (you’re going too slowly! Don’t let my hip rotate!). I became (as you will also become, I predict) obsessively fixated on my restrictions. This is because you are told 5 million times that you have to adhere to them. I had to constantly interrupt my husband or one of my children to come lift my leg into my pants, or to get me out of the car (for real: STAY HOME). It was draining on my family, and particularly my husband. I think this would have been easier to deal with had we known the intensity of my helplessness prior to the surgery. I was adamant that I get all my circumducts in given my history with scar tissue, and that was really hard with him returning to work when we got home. You cannot get your own food, you cannot get yourself out of the CPM machine in the middle of the night if you have to pee, and you cannot put your shoes on. You will need help all day and you cannot be alone at night, either. Let whomever is helping you know this up front.

Anyway, back to Vail. The basic schedule is PT twice a day for as long as you’re there–we were there ten days. I think it would be beneficial to stay longer, but we have kids and my husband has a job, so it just wouldn’t work (unless done in summer and we took kids). You will be doing a lot of PT when you get home, and the PTs at Vail will teach you how the exercises should be done (most can be done at home). Make sure you pay attention to the techniques they show you. Two days after surgery, you get x-rays, and you are shown a pre- and post-op x ray. The difference was shocking–my goodness my hip was so impinged, and now it is wide open! On that second post-op day, I had a major complication. Long story short–I developed severe aspiration pneumonia (I aspirated during surgery, and it had to have been that Lyrica tablet). I was put in the hospital for five days, which means I missed a lot of PT. They came to me, but I was far too sick to do a lot of the exercises. That whole mess is a whole other blog post. Once I was out of the hospital, I started aquatic therapy. Make sure you do this, it makes your hip feel so much better.

The day before you leave, you’ll see Dr. P and his team again, where they will again go over your post-op instructions, your restrictions, and then you head home (don’t worry, you come back in 8 weeks). Except heading home is an ordeal if you’re flying. Make SURE you bring a large, empty duffle bag with you, as you’ll need it to put a bunch of medical equipment in. You also have to check the giant CPM machine in an equally giant box. You’re on crutches, so you need a wheelchair at the airport, and your helper can’t possibly carry everything. Here’s how we handled this: we heavily tipped someone at the rental car place to drop us off at the departure gate rather than ride the shuttle to the gate (that would have been a nightmare), we did curbside bag check, we called the airline ahead to reserve a wheelchair (this is important–there was a line!), and they (Southwest) had a dedicated person who took us all the way through the airport, and we got there really early. Dr. P will give you a letter indicating that it is medically necessary for you to have a bulkhead seat, so make sure to present this to the gate agent as soon as you get there. I have never been so relieved as when the cabin door closed and we took off. I really didn’t know how we were going to manage getting on that airplane.

The first week at home was very difficult. I was still having post-op pain, I was helpless, and the rest of the house had to go back to normal. I was also on a lot of post op medications (they put you on a bunch to reduce scar tissue), and I remember needing to take them, but they were in the other room, I was stuck in the CPM machine, and even if I hadn’t been I would’ve needed someone to lift my leg out for me. I felt really isolated, and very much like a burden. I, nor my family, understood the amount of help I would need following this surgery. After all my other surgeries, while I’ve needed a little help, there has never been a restriction on how I can turn or move my leg, and I could use my hip flexors. You also need help getting to and from your PT clinic, and you do an additional 2-3 hours of PT at home. We jokingly call my hip the newborn baby. It really does require that much time and attention in the first two weeks.

After week three, things get a little easier. They aren’t easy, but you aren’t so helpless. You can finally lift your own leg, and you can begin bearing 50% weight on your crutches (so you still can’t carry anything quite yet). Once I hit week 4, though, is when I finally felt like a new mother whose baby slept through the night for the first time ever. My circumductions went down to twice a day (plus my PT loaned me a baby swing approved by Dr. P to do circumduction…they are about $250 to buy so I wasn’t going to, but since he had one to lend, I use it now instead of my husband to get my circumduction done. It’s called a mamaroo and you use it on the figure 8 setting), and I no longer had to spend 8 hours a day in the CPM machine. I’m also allowed to externally rotated and extend my hip, which means I can sleep in a position other than flat on my back. I’m weaning off crutches (can walk without crutches a little at home, and down to one crutch outside of home). Walking for the first time feels very weird. Make sure your PT helps you when you take your first steps! Over the next few weeks, I have more and more challenging PT exercises being added, and I return to Vail for my follow up on 1/24 (I’ll blog about that also) for my 8 week follow up. At this point, I’ll get a new PT protocol based on my progress, and will hopefully get some dates about when I can swim, cycle, walk, maybe run, etc….though I don’t expect to do any cycling for 6 months and no running for a year.

This is a big surgery, and the recovery is long and, for the first few weeks, very tedious and rough. If you find yourself at Steadman Clinic, know that you’re in good hands, but also that you need to do every part of your post op protocol as prescribed. It is hard to get it all in, and to adhere to the restrictions, but you must be vigilant about it. Advocate for yourself (“Yes, I really do need you to pull up my underwear because I cannot use my own hip flexors”), but also don’t be too hard on yourself–around 10 days after surgery I accidentally rotated my hip externally and was sure I’d ruined the whole surgery. Do the very best you can, but know that you cannot possibly perfectly adhere to everything in the big binder they give you. I am confident that all the stress, work, tears, and having people put my pants on for me will be worth it, and that I’ll live with a pain free hip!

#vail #steadmanclinc #drphilippon #hipfai #hipimpingement #labraltear

 

…And I’m Still Hurting

My last blog post was an emotional, cathartic one in which I announced that I was giving up on running for good. Though that is true, and I’m still not thinking about returning to running, I have continued to try to find answers for why I have had so many freakish injuries and syndromes. As a refresher, I have, since 2009, had 9 orthopedic surgeries. 8 of these have been since 2014: obturator nerve entrapment, tarsal tunnel syndrome (posterior tibial nerve entrapment), left interdigital nerve entrapment (aka neuroma), plantar fibroma removal (due to plantar fibromatosis), torn posterior tibial tendon, exertional compartment syndrome (both legs), and two exploratory laps (abdominal adhesions following pregnancy, which affected my phrenic nerve). I have a hip surgery scheduled later this month, which will bring me up to 10 surgeries by the end of this year. If you add in my tonsilectomy, gallbladder removal, and fracture finger repair when I was 13, plus another surgery I’m likely to have in 2018 (details below–my left foot), I’m up to 14 surgeries. I am only 35 years old, and have never experienced any kind of major physical trauma that would typically coincide this many surgeries.

I went to Mayo Clinic in Minnesota this week–they accepted me as a patient this past spring, but I had to reschedule my original fall appointment due to being very ill with an H. Pylori infection (that’s a whole other blog post!). Getting accepted to Mayo is an ordeal. You have to send all your records for a pre-review in order to see if you’re sick/odd enough to warrant their evaluation. I had to send them ALL my medical records from past surgeries, MRIs, EMGs, etc. They accepted me pretty quickly. I drove to Mayo by myself this past Sunday. Tim could not come, as he has to take off for my Colorado trip. I hated to go by myself, but that’s just how it had to be.

I’ve been in a lot of hospitals, and this one was definitely impressive. It exudes the definition of “patient-centered care.” Walking in, I was incredibly hopeful. My first appointment was with neurology–they are the department that accepted me as a patient. The senior neurologist came in and introduced himself in a VERY Minnesotan accent, and told me that his fellow would do my initial exam. He came in next–Dr. Z. He was great. Kind, thorough, but down to business. He examined me for at least 60 minutes, then talked to me about my story for another 45. What’s good about Mayo is that they’re interested in the story, not just the “what’s wrong at this moment?” I have lots of surgeons to whom I can go when things need fixing, but so far no one has looked at the entire comprehensive picture to try to figure out a cause. He excused himself, told me he would go talk with the senior neuro, and they’d both come back and share with me the plan.

About 15 minutes later, they both entered, and senior neuro was in charge this time. He summarized my story to make sure he had it right, then laid out the plan for me–they wanted to rule out two main categories of issues: 1) genetic conditions (specifically, hereditary neuropathy with liability to pressure palsy, or HNPP); and 2) any kind of auto-immune neurological disease that may be affecting my nerves, making them more prone to entrapment. I asked about the rest of my injuries (the non-nerve ones, which are also like super weird), and he explained that they would tackle that once they ruled out anything neurological. I was to have a blood test, then an EMG the following morning. They also wanted me to see a neurosurgeon (I have a very painful nerve in my foot, despite having it released last year) to see if he can provide any insight on my injuries and also what to do about my foot, which my surgeon here is considering re-operating on to remove the nerve.. He is also an orthopedic surgeon, so he seems like the perfect person to evaluate me.

I had my blood drawn immediately, and the following morning had the (very painful) EMG. I have had many EMGs, but none like this. It was very thorough, which also meant painful. I had been told to go to the neurosurgeon’s dept to see if they could fit me in. Despite trying, they could not, and the earliest I could get in was Nov. 17. That would mean staying in Rochester (alone) for an additional 10 days. There was no way I could swing it with work and family, especially since I have to spend 8 days in Vail, CO later this month. I cried. They were so nice to me, but I cried. I had a bit of an anxiety attack, thinking that if I didn’t see him I’d never get any help. Because I’ve had so many bizarre injuries that are difficult to diagnose, and also OCD, I have an irrational fear that “no one will help me.” Even at the Mayo Clinic, where people who are at the end of their ropes go, I began to have this obsessive, intrusive thought. I called my brother, Wes, who suffers from OCD like I do (we are not obsessive hand washers, but we have intrusive thoughts that are usually irrational and play over and over and over in our minds). We talked about worst case scenarios and how I should tell the neuro fellow that this is my fear, and ask what the plan is.  I was to meet with him later that afternoon to go over my results.

He spent an hour with me going over everything. My EMG was normal, despite some slowing on my right posterior tibial nerve where I had tarsal tunnel syndrome. Despite having VERY abnormal EMGs in the past, when suffering from an acute entrapment, the values are now normal. This means that the releases I have had done (save for the one on the left, between the toes, which is too small to be tested by EMG) have been successful, and my nerves have been able to repair themselves following significant entrapments. This test ruled out any underlying problem with the nerves themselves. While my body likes to entrap them, they themselves are healthy. The test for HNPP was also negative, which is good because there is no cure, and my kids would have a 50% chance of having it also. So instead of just saying “Sorry, normal” and sending me on my way, he talked to me for almost an hour about what the plan was.

Here is what he said (I recorded it): “While these tests are normal, there is clearly something very wrong and different with you, and you have endured much suffering. I don’t want there to be any downplay of what has happened to you. What we know now, definitively, is that an underlying neurological disease is not causing your issues. What Dr. Keegan (the senior neuro) and I believe is happening is that you have a musculo-skeletal, soft tissue orthopedic problem that tends to affect your nerves. But not just your nerves–the torn tendon in your foot, the fibroma, the labral tear–those are all very significant injuries, and the fibroma is especially rare. The labral tear happening when you were running very low mileage, after never having happened when you ran very high mileage, is also concerning. Your significant back issues that have required hospitalization are also a clue that something is going on with the way your body rests on the earth–the way it sits and moves. You have also gotten entrapments when not running at all. But we believe these are isolated injuries caused not by the injured areas themselves (nerves, tendons, etc.) but by some problem with your body, and the way it moves. We would like you to come back for an additional evaluation by our neurosurgeon that you couldn’t see this time, the orthopedic team, and the sports medicine team. We believe they can best help you to treat or mitigate whatever is causing this. They may be able to perform a corrective procedure or surgery to make your body move normally, or provide some corrective measure. Also, now that you are a Mayo patient, should you continue to need surgeries, you can always come here and have them or get second opinions. All you have to do is send me a note, and I can send you to any Mayo physician you want to see.”

I was told I could come back the end of November. However, that’s when I’m having hip surgery at the Steadman Clinic in Colorado. I kind of began to panic–I want to come back. I want to see all those specialists. But I have this major surgery in a few weeks, and the recovery is huge. “It’s okay–you can come back whenever you’re available. How long have you been dealing with all of these issues? Five years or so?” He was correct. “This is a long journey. Most people get help here after having suffered for years. You’re in the right place.” I asked if I could talk this over with my husband, and come back at a time that he could accompany me. He said yes. He told me to send a message to him on the patient portal app (yes, you have direct contact with your physician team) and he would send the referrals and get it set up. “So I can go home now?” “Yes, you can go home, but we’ll see you back once your hip has healed.”

Before I left, he asked, “So do you want to get back to running?” I felt the threat of tears pressing at my eyes. I am currently incapable of talking about my lack of ability to run without sobbing–it is a problem. I told him that, while that would be amazing, and I mean AMAZING, my main goal honestly is to live without pain and disability. Even as I say the words, though, the grief I feel about not running stabs me. I am working on making that my real goal. I told him I wanted to start cycling. And that is true, I do (after my hip is healed, which won’t be til spring/summer). But it feels kind of like a lie. I do want to cycle, because I need something–I am completely out of shape and feeling strong and in shape is part of my identity. But my loss of running feels nothing short of a death. There are moments at which I can hardly bear it. Everyone in my town associates me with running, and they all ask me about running. It is exquisitely painful. I go through severe depression, sadness, and anger. I used to worry about that seeming silly to people, but I do not anymore. I am grieving, and I don’t know how long it will take for that process to complete, or if it ever will.

So, I don’t know if hope is the correct word to characterize what I feel after Mayo. But I do feel less isolated, and I feel heard. One of the worst parts of this experience (journey? I don’t know what to call it) has been profound isolation. I’m no longer part of my major social network. Humans biologically require social networks. Because my main social network was comprised of people who run, I no longer meet the criteria to be included in it. I do not mean to say that they kicked me out or stopped talking to me, but I can no longer engage in the activity that was at the crux of and provided context for those relationships. I don’t just mean close friends, but all runners with whom I associated. Also, my entire family, including my husband, brother, and dad, are runners. Pardon the tip of the hat to Ben Platt, but I’m on the outside looking in. Everyone else in my network has continued on as normal. Again, I don’t mean to say they turn their noses at me, but I’m incapable of being “one of them” anymore. And it SUCKS. It’s horribly painful. I have other social networks and friends (theater, work, etc.) that are wonderful, but the running community was my main one. The pain I feel when I see runners post about runs, races, etc. is SO INTENSE that I’ve considered giving up social media entirely. I cry every time I see it–people running on my trail. People right after a run or race. I get angry. It is absolutely, unequivocally grief. While my world has stopped with regard to running, theirs has not. And none (or very few) of them appreciate or are aware of how hurtful it is to me to see these things. I am NOT saying that every runner I know should stop posting on social media just for me–of course not. But it is a daily, and sometimes minute-by-minute, reminder of what I have lost and of what I am no longer a part. And hurts. Badly.

At Mayo, I saw other people like me. Not ex-runners, or not that I know of, but people who are desperate, exhausted, and hurting. I heard snippets of stories in waiting rooms, as people discussed how many doctors they’d been to and how arduous the process is. I wanted to be like, AMEN. I get it. Like, the fact that they have binders full of records and information about their condition is totally normal to me. I legit have a PowerPoint presentation and graphic timeline of my problems that I keep with me for medical providers. I didn’t talk to a single person there outside of my doctors and the Mayo staff, but while there I was like “Hey, these are my people.” That felt, if not good, reassuring.

I am absolutely in the right place and on the correct trajectory at Mayo. I can’t wait to go back. In the mean time, I continue to grieve and let running go a little bit more every day. How I feel is best summed up by a lyric from a song called “I’m Still Hurting” from the musical (I mean, of course!) The Last Five years:

I’m covered with scars I did nothing to earn
Maybe there’s somewhere a lesson to learn
But that wouldn’t change the fact
That wouldn’t speed the time
Once the foundation’s cracked
And I’m
Still hurting

 

 

Sometimes, quitting IS the answer.

When people tell you that you can do anything you put you mind to, or anything you want, they are wrong. I’m not saying hard work and dedication are not important to achieving goals–they absolutely are–but, there comes a time, in any endeavor, that you may need to say, “Okay. This is not happening. I need to move on.” It is not something to say after the first hiccup in your road to success or achieving your goal, or even the 100th. You will know when the moment comes. I promise. Quitting something you love deeply is not fun, or fair, and it certainly isn’t because it happened for a reason or because some other amazing door is opening. It is a terrible experience, a terrible decision to have to make, and you will grieve profoundly for your loss. Still, it is often a decision that must be made out of self-preservation.

About a month ago, I decided to quit running. I did not give up on running. I consciously ended my pursuit of it. It was a painful decision to make, but one that gave me the peace that has alluded me since around 2013. When I finally said it out loud, and told the key people in my life–“I’m not going to run anymore,” some of them began to say the familiar “You will! You’ll get back to it!” I had to interrupt and say, “No, I’m quitting. I’m not going to do this anymore.”

And, by god, I meant it. You’re probably wondering why, given that my last post was about a surgery I had to free a nerve in my left foot, and how I’d get back to running. I did get back to running after that surgery, around mid-March. I had a lot of trouble with recurring pain in the nerve that was released in that foot, but I was able to run. I got up to about 30 miles a week a couple of times, and my longest run was 8 miles. I actually had one of the best runs of my life–8 miles with my brother, Wes, on the Milwaukee Trail, late May, shortly before things blew up again. I had just finished a dose pack of prednisone to help with the nerve pain, and I ran virtually pain free with Wes. I made a plan with him to run a 10 mile run with him and my best friend, Jo, on my birthday, which was June 11.

On June 1, I set off at 5:55 am to meet Jo for her annual birthday run. I arrived at her house (.40 miles away) feeling good. We took off with her dog, MaeBe, for an easy 4 miles (she was racing a mile that night). Things were unremarkable (I had my usual left-over-from-surgery pains) until about mile 2.75. We stopped to let MaeBe lick grass (yes, she licks grass) for a few minutes. When we started again, as my left foot hit the pavement, I had a striking pain deep in my left hip. I tried to shake it off, and even managed not to mention it to Jo til we got back to her house, around 3.6 miles. But something was wrong. I tried to stretch it, but nothing helped. As I told her and MaeBe goodbye, I was worried. I had an anticipatory anxiety about what was going to happen when I took my first steps toward home. I was correct–I had severe, deep (and I mean DEEP) pain in my left hip. I was limping. I refused to stop running, because I couldn’t be seriously hurt, right? My longest run was 8 miles!

By the time I reached home, tears brimmed my eyes. I went to my foam roller, and furiously rolled out my left quad and hip. I couldn’t find it. I went outside and ran a few steps–still sharp, debilitating pain. I went back in to try to roll again. I did this at least 20 times. Things were spinning out of my control. Tim was there. He was doing something in the kitchen. It was all I could do not to scream HOW CAN YOU BE COOKING EGGS WHEN THE WORLD IS CLEARLY ENDING HERE? I told him what happened. He said he was sure I was fine, I wasn’t running much. But that’s what everyone always says. I paced back and forth. I tried to hop on my left foot–I could not, as the pain was too serve. I went into immediate emergency detective mode, as I have done so many times when something like this has happened. Stress fracture? Fits the symptoms but seems unlikely given the mileage. Torn labrum? How? Tendonitis? No. I know tendonitis, and this isn’t it. Bursitis, etc. etc. All I could tell Tim is this was something I’d not yet felt, and I’ve felt a lot of things. I know nerve pain, torn tendon pain, muscle pain, etc., and this one just felt very different.

My whole world stopped on Thursday, June 1. I was hurt. Again. And it was bad. I got a massage, no help. I was frazzled, depressed, and scared out of my mind. I didn’t know if I could survive another heart break. I knew I’d survive the hip injury…but from having this rug ripped out from me again? I wasn’t sure. I called my sports medicine doctor and begged to be seen the following day. He saw me, examined me, and looked at the x-ray they took. There was a little shadowing over the left hip, and it looked like edema. He did not suspect stress fracture, but ordered an MRI to be sure. I had it that day. Later that day, he called to tell me that the MRI was normal; I had a little fluid in there, but I was free to run, and that I should run. I was relieved, but then remembered–I can’t run. I can hardly walk. The pain got worse over the weekend. Turning over in bed was pure agony. Getting out of a car was almost impossible. I have had a lot of “normal” MRIs in my life, only to find out something was very wrong (e.g. obturator nerve entrapment, tarsal tunnel syndrome, etc.). I was very depressed. I drove to Louisville that Sunday, and was in so much pain when in the car that I had to stop and stretch my leg just to keep from passing out. I didn’t want anyone to know. Jo and Tim knew, of course, but I was strangely secretive about it (denial?). On my way home from Louisville, I remembered that Methodist Sports Medicine, where I have my surgeries, has a walk in clinic weekdays from 8-11 am.

The next day, I was at Methodist Sports Medicine (in 6/10 pain) at 7:50 am, waiting to be called back at the walk in clinic. No one else was there. I remember thinking, as I sat there, “I hate this. I hate that this is my life. Sitting here, with my entire happiness hinging on them finding out what’s wrong with me, and fixing it, so I can run.” I had convinced myself that I did indeed have a labral tear, but I couldn’t imagine how I had done it (they are typically from trauma or from very high mileage). A med student walked me back, and asked me my surgical history. Lacking patience, I said, “I have had like 12. Can you just look them up in the computer?” I felt really guilty about that afterward, but he did what I asked. Dr. Alvey came in, and I liked his demeanor. He asked about all my foot surgeries, and I was like “Yeah, yeah my feet are a mess but my HIP…” and had to explain that, despite what my chart says, I am not currently a high-mileage runner. After examining me, he said “This is presenting as a classic labral tear, but I cannot imagine how you’d have one.” I was like “Right?!” He thought for a moment, and then said, “I’m going to send you to our hip guy, Dr. Maiers.” I knew that would take forever, so I gently said, “Okay, but before I go, can you please do a diagnostic injection of my hip?” Puzzled, he agreed to do so. A diagnostic injection of the hips involves injecting numbing medication into the hip joint–if the pain goes away, the pain is definitely coming from inside the hip joint (which was likely anyway given the MRI didn’t show anything extra-articular). As he prepared to do it, he said “So how do you know about diagnostic injections?” I explained that I’d been around this block a few times, and that I also am a nurse.

The injection worked. The pain was 100% gone. Totally. I could hop. I could run. I could cross my legs without screaming. “That’s not 100% diagnostic for labral tear, but that’s really close,” he said. He told me to NOT run, and to follow up with Dr. Maiers, who operates on these. The lidocaine wore off within three hours, and I was back to agonizing pain. But I was happy just to have a diagnosis, and also that I got to see Dr. Maiers only two days later.

Dr. Maiers, though, said he did not believe I had a labral tear. He said he thought I had a femoral neck stress fracture. WHAT? Tim and I were so confused. An MRI would have shown that. He explained, “I think your MRI was too soon after the injury to show up. You look to be in way too much pain to have a labral tear.” He acknowledged that, clinically, my symptoms matched a labral tear, but he wanted me to get another MRI to ensure that it was not a stress fracture (labral tears are very hard to see on MRI, though he is trained to see them). He also said the lidocaine injection could have numbed the fracture, which I indeed questioned, but figured he knew what he was talking about. He did not look at my initial MRI, which, in retrospect, I wish I had asked him to do. So, on June 9, I had another MRI. I spent my birthday being depressed, worried my leg was broken but also sure it wasn’t, and sad I couldn’t run on my birthday.

The next day, his nurse called me and said, “Your MRI is normal.” I felt gutted. “Then what is it?” “Uh, he wants you to do physical therapy.” “Well, if it’s not broken, and he doesn’t think it is a labral tear…what is it?” She just told me to schedule PT. It took a couple of hours, but I sobbed. Not just a little, but that good, heavy, shoulders-are-sore-the-next-day kind of sobbing. I felt like I was at the end of a tunnel, the other end of which was not visible to me. I was in serious pain, and no one could find anything wrong with me. I was devastated, and I did not have the energy to do this….again. I taught class the next day (to PhD students), and mentioned what was going on with my hip, that it may be a labral tear, etc. And one of my students said “You should email me. My husband was operated on by Dr. Maiers.” So I did.

I ended up speaking with this student’s husband, who told me that Dr. Maiers operated on his torn labrum in 2009. The surgery made him worse. I am NOT saying that Dr. Maiers is not a good surgeon. I think he is, in most cases, but I am and always will be a complex case. He explained to me that he went to Vail, CO (the Steadman Clinic) to have his hip redone, and to also have the other hip fixed. He runs pain free now. I ran to my computer, and contacted them. I was told to send medical records to them by mail; they would then have their surgeon review them, and call me back with an answer. I furiously collected my records…all with the goal of running again. It was in the front of my mind.

I received a call from Steadman Clinic on July 6, stating that they had received my records, and that I would receive a call in 30 days. Meanwhile, my left foot, which had a nerve released in December, was majorly flared up. I was in pain from my hip, as well as my foot. I had contacted the Mayo clinic a few weeks earlier, to see if someone might be able to find out not just what is happening to me (fascial and scar tissue overgrowth), but why and how to fix it. I sent them all my records also. Somewhere around here, I had a discussion with my psychologist, Christy, that ended with me saying, “It would be easier if I could just quit trying to do this.” “Why can’t you?” Well, I can. And I want to. Obviously, my hip and foot need fixed no matter what, but the expectation of running makes everything so much more temporally-based and stressful. So, just like that, I decided to stop doing this.

Mayo called me on July 14 to tell me that neurology had accepted me as a patient, and could I come to Minnesota on July 25? I told them that was a little fast, so they moved my appointment to September 19. I could not even rejoice at the news at being accepted there, as I was still so worried about my hip. Each day came and went, and Steadman never called.

Then, they called me today–he reviewed my scans, and I do have a large, anterior labral tear of my left hip, along with CAM impingement (google it). I am a surgical candidate; Dr. Philippon will operate on me, likely in December. Also today, I saw Dr. Porter about the nerve in my foot. I likely have to have it removed, but he wants me to see Mayo first to see what they say–is there some systemic treatment that could help it? If not, he’ll take it out in October.

So, everything is lined up to get me fixed. Only this time, it’s not for running. It’s to be able to enjoy a life that is as pain free as possible. I want to be able to walk around NYC with my daughter, and Disney World with my family, and not wince in pain every step. That’s my new goal.

I do not mean to sound so sunny about this–I have done nothing but grieve running from the day that I quit. There is a hole inside me, one that is raw and hurts every time I drive a road that I used to run, or see pictures of my friends running, or send my husband off to a race, or see my old running shoes or race medals or even an old packet of Gu. A piece of me is gone, and I am gutted. Yet, everyone around me still associates me with running, and this is partly the reason for this blog. I was a runner. I loved (and am fighting to rid myself of that love) running to my core. I love it probably more than anyone you’ve ever met. I talked about it all the time, and it was a huge part of my life. I taught others to become runners. I got a pedicure yesterday. The first thing she asked was, “Are you a runner?” Oh, the pain. The deep, deep pain. I just said yes, as that was easiest. My toenails still tell that I’m a runner, as do my calves. People innocently share running-related things on my FB wall. I cry. I’m inconsolable at times. I yearn for that part of my life back–not just the pounding of my feet, but the time with my friends, with my husband. I feel empty.

However, this feeling beats the feeling I had before–the feeling of everything crashing down around me every six weeks or so. I will still need surgeries; bad things will still happen to me in terms of my body wreaking havoc on itself, but now I do not live in fear of that stealing running from me. The only positive thing about deciding to quit running is that I am no longer tortured by this cycle. But I am sad, and I am trying to navigate this grief as best as possible. I do not mean to say my grief is the same as losing a loved one, or having a miscarriage, or not being able to conceive a baby. I realize there are worse things. However, I have experienced loss in my life, and what I feel now is a deep, aching sense of loss that has not yet relented. I have lost a large portion of my identity, as well as my place in a tribe of runners. I sometimes have fleeting thoughts of running again, and maybe I will, but my quitting of running remains open-ended for now, as that’s the only way I can not live in anguish.

If you are a runner and I seem distant, I promise you it’s not personal. But I can’t be around you right now, or read about your runs, or answer your questions about my favorite trail shoes. One day, I will be able to. But not now. I don’t ask for pity, but for empathy. Please don’t tell me that I shouldn’t quit, or that I shouldn’t give up. You don’t have to tell me you’re sorry–I know that you are, and I know you know that this is a horrible thing that is happening to me that I can’t control other than to say I won’t allow myself to be a slave to the cycle of disappointment. I know you get it, and that you’d die if you had to make this decision. Please don’t tell me to start cycling, just as you wouldn’t tell someone whose dog just died to go get another dog, or a cat. Just give me your silent understanding, and your space. And if you find yourself in a situation in which your happiness and ability to exist in a peaceful state are constantly hinged on something that consistently breaks down on you–make it stop. There is no shame in quitting–not when it will ease your suffering long-term.

P.S. I do want to cycle, but that has to wait for my hip surgery ❤

 

The Agony and Triumph of 2016

Everyone hates 2016, and with good reason. We all find ourselves clinging to the promise of 2017 with hope and exhaustion. Many of us fear where our country will go with you-know-who at the helm. But plenty of people have had great 2016s on a personal level, and others have had horrendous ones. Mine has been mixed.

Let me start off by saying that I am extraordinarily grateful for all the things and people I do have–a stable and enjoyable job at which I’m successful, a wonderful husband, two wonderful (and healthy) children, and supportive friends. I don’t want for anything, and neither do my kids. I am utterly aware that many people do not enjoy these attributes. I am also so thankful.

Real talk: when looking back on 2016, my memories are marked by a lot of interpersonal turmoil, genuine suffering, loss of identity, battle with two invisible diseases, despair, feelings of complete loss of control, and an isolation I’ve never felt before. While everything around me–family, job, etc.–has remained stable and healthy, I have watched and experienced myself morphing into another person. It has been incredibly painful, both physically and mentally.

Here’s a quick overview–I had surgery for a torn posterior tibial tendon in August of 2015, then entered treatment for a 17-year-long eating disorder in October of 2015. I started running again in December 2015, only to sustain my first-ever stress fracture in March of 2016 (from wearing orthotics for the first time in my life). I resumed running in May, and by mid-June had developed a significant pain in my right foot, which was finally diagnosed as severe proximal tarsal tunnel syndrome (google it, but nerve entrapment in the ankle similar to carpal tunnel in the wrist), and required surgical intervention. I also was very ill with pneumonia in August. I had the tarsal tunnel surgery on October 11, and the amount of dissection required to free the nerve was quite extensive–I was in a lot of pain post surgery, and my right foot is still not normal. Shortly after this surgery, I was diagnosed with an auto-immune collagen disorder that predisposes me to nerve entrapments. There is no treatment. While waiting for this surgery, and not running or doing any impact exercise at all, because my tarsal tunnel foot made it impossible, I developed nerve pain between my third and fourth toes on my LEFT foot, which has never given me any problems. After the tarsal tunnel surgery, my surgeon injected this foot twice–both times it wore off. An MRI showed bursitis between the toes and no neuroma, but he decided to do surgery anyway given my history. I had this surgery done on December 23, and he found that fascial bands, as well as a hypertrophic (overly developed) metatarsal ligament were strangling the nerve between those two toes, so he released it. So, I am currently in a boot recovering from that surgery, while my right foot, which had extensive surgery performed on it about 2.5 months ago, is now having to literally carry all the weight.

I’ve had ten orthopedic surgeries since 2009, and five of those have been since 2014. My goal in having surgery has always been to get back to running, ASAP. Cut me open, fix it, tell me what to do, and then tell me when I can start running again. I have slowly lost that mindset, and now I am genuinely most concerned with not having to live in chronic pain for the rest of my life. I have experienced, in the last twelve months, a degree and duration of physical pain that I did not know existed. I have a new appreciation and empathy for people who live with chronic disability and pain, and am hoping I’m not becoming one of them. I watch other people walk around and am envious that their feet don’t hurt. The incision from the tarsal tunnel surgery is almost ten inches long, and while the nerve pain I had prior to surgery is much, much better, now I have a lot of pain from the extreme dissection he had to do of my foot. With every step, I’m reminded that something is wrong with me, and always will be, and I will go through this over and over again. Will the pain from surgery get better? Yes. But then I know that something else will happen, and new pain will come. The pain from the tendon surgery in 2015 finally was all gone by July of this year, but by then I had tarsal tunnel syndrome. So I am literally never without pain.

People will tell you, and they’re correct, that long distance runners, and especially ultra runners, are always in some kind of pain. Something always aches when you run that many miles. But I didn’t even run 1,000 miles this year. I am not running at all, and I’m always in pain. I used to always hear, “Maybe you should stop running, and you’d stop being injured all the time.” It enraged me when people said that, but guess what? I have. And I’m still hurting all the time. I have no control over it. I cannot do this or stop doing that and make it any better or less likely to happen. And none of it is my fault, as I’ve also been told when I was still running a lot.

Compounding this physical pain has been the emotional toll of losing my identity as a runner, and also my place in my tribe. My main social activity has, since 2008, been running. I’m married to a runner, best friends with a runner, and everyone knows me as “runner.” I love that part of myself, and it’s who I am. While I’ve always been battling injuries since I began running, this year has been a pretty significant blow to Wendy as Runner. I guarantee you that I want to run, and run a lot, more than just about anyone you know. My body aches for and craves it. I dream about it. And running is NOT causing all these nerve entrapments and need for surgery. It’s not my fault, and it’s not running’s fault, that this keeps happening to me. So, at one point this year, I kept trying to tell myself I would just accept that running may never again be the same for me. I may never race again. I may never run another ultra. I may never feel the soul-sucking pain and fatigue that come at the end of running 50 miles. Maybe I would stop altogether, and save myself the heart ache.

I got into a really dark place this summer and fall. While I know and love many runners, I found myself unable to stand thinking or talking or seeing anything remotely related to running. Tim’s running shoes on the floor, seeing a strava notification pop up on his phone, the sight of my Garmin in the same spot it’s been for so many months, and the knowledge that a race was being run in my community, mere blocks from my house, were too much for me to handle. I would go to bed and cry. I would spend days at a time sobbing intermittently. Even when I was able to run some, I found myself angry at other people I saw, who were able to run more and without pain. Well-meaning people asking me what I was training for would evoke a fight or flight response from me. All I can say is that it was a really, really hard time for me emotionally. My eating disorder reared its head during this, and I suffered several temporary relapses, and I’m still having to work very hard to keep it together in that regard. The desire to engage in purging or restriction is SO strong when I feel out of control of things. My disorder was the one thing I could have, own, and completely control. I have always disclosed to Christy, my psychologist, when I’ve used symptoms, and she, along with my new dietician Stacey, and coach/sports psychologist, Craig, have been able to help me get things back together. But I would be lying if I said I remained in very firm recovery territory–I’m absolutely not. I’m not actively engaging in my disorder, but I fight with it a million times a day. I’m still winning about 90% of the time.

Craig talked to me not long ago about how my disdain and resentment for anything related to running was hurting no one but myself, and he asked me if I was experiencing any joy in my life. Not just oh, sometimes I’m happy and sometimes I laugh, but was there any JOY. No, there was not. Before this most recent surgery, he told me he wanted me to go do a trail run at Pate Hollow with friends. I was like, “WHAT?” I can’t do a trail run. Especially a hard trail. He insisted that I go, walk the hills, and simply experience joy. And so I did it, and it’s one of my best moments of 2016. My right foot hurt, I was desperately out of shape, but I engaged in something I have missed on a visceral level for so, so long. After that run, I was able to mentally reframe enough to not be so resentful of other runners, or to avoid so strictly any talk about running. I’ve done a lot of work with Craig regarding this, and it’s working. It feels very much like working through grief, and I feel more free because of it.

Craig says I’m still an athlete, and I’m still an endurance athlete. While I have been doing some biking and swimming, I still don’t quite feel that way. What I do know is that the healthiest thing for me is to not set goals that 100% rely on my body to not need surgery. That doesn’t mean I can’t train, and that doesn’t mean I can’t race, but it means that I am literally training day-by-day. Christy had the idea of me training completely blindly, with Craig. He will tell me what to do each week, and when it’s time to race, he’ll tell me it’s time to race, with as little notice as possible. I’ll never know what’s coming. Craig is also coaching Tim, and so he can communicate with him to ensure that my schedule is open for whatever race. All I have to do is what I’m supposed to do in that day. If I have surgery, if I don’t know that I was going to be racing in a few weeks, it will be much easier to take. I see it as engaging in and accepting the journey as it comes, rather than constantly battling against it, trying to make things go my way. The reality is that my body makes too much collagen, forming internal scar tissue, which leads to nerve entrapments. I will continue to need surgery at regular intervals for the rest of my life. There is absolutely nothing I can do to change it, and sulking around because I can’t do exactly what I want, when I want, serves no one.

I began to emerge from my isolation about a month ago, and I am truly feeling better. I have to note that my husband, Tim, is so amazingly supportive and wonderful to me. He’s not perfect, but he’s pretty damn close. I am not exaggerating when I say I could not have survived this last year without him. He stayed by me during the ups and downs of all of this, and he rubbed my back while I sat in a pile of my old running shoes, crying my eyes out. He takes care of me after surgery without missing a beat, and never complains about it. Whenever and if ever I do race again, I will cross that finish line running straight for him, and I know he’s my biggest supporter.

So I have zero running/athletic goals and aspirations for 2017. None. I have no idea what will happen, if I’ll run consistently, if I’ll race, etc. I’m signed up for nothing, I have no idea what Craig has planned for me after I recover from this latest surgery, and I feel very good about that. I am relieved to not have to try to steer an unsteerable ship to xyz race, failing each time. 2017 is so long to desperation in trying to make square pegs fit into round holes. To quote one of my favorites, Lin-Manuel Miranda, from Disney’s Moana:

All the time wondering where I need to be is behind me

I’m on my own, to worlds unknown

Happy New Year ❤

The Story

I have started and stopped numerous blog posts over the past six weeks. I think I will actually publish this one, though.

I said I wasn’t going to post publicly about my running anymore. And I’m not–at least, not in the same way. However, I have a little more to say on the topic.

Four days ago, I had surgery to decompress my right posterior tibial nerve. This is my fifth entrapment-related surgery since 2009. In late June, I began having some pain in my right arch/big toe, that was then spreading to my entire foot. It started in the middle of the night one night. I’ve had enough nerve pain that I knew what it was pretty immediately. I went to the doctor and was told that it was just a sprain/strain, and that I should keep running. So I did. I even ran a half marathon on it. And it got worse, until finally, one day, I could take it no more. I was really sick of people telling me this was just a niggle that would go away, and that I was being paranoid. Something was WRONG with my foot. Everyone was dismissing it as me being neurotic about my running. How could I be injured? I was running barely 30 miles a week. Finally, after an extremely painful 10 mile run, I told everyone around me–my coach, my husband, my friends–that something was seriously wrong with me and I was not going to keep running. So I stopped.

The pain worsened. This was mid-July. I was absolutely miserable, with constant pain. I contacted my main surgeon (he’s done the majority of my surgeries), and he ordered an EMG. I knew what it would say, but I had to have it done in order to get treatment. I had significant demyelination of the right posterior tibial nerve and all branches (calcaneal, medial, and lateral plantar nerve), and there was evidence of extreme entrapment. I heard all the things I usually hear–this is abnormal, this is impressive, I must run a LOT of miles (except I don’t). The results were sent to my surgeon, who diagnosed me with severe tarsal tunnel syndrome (like carpal tunnel, only in the ankle, and it’s rare). He told me he would inject it. If the injection helped, that meant I was a good candidate for surgery. If it didn’t, I might have permanent nerve damage. He was clear that the injection would not cure the entrapment. So I had the injection, and then left for New York with Amelia, where I walked all over Manhattan. Interestingly, I was also in NYC when I had my obturator nerve entrapment, and could hardly get around the city. Anyway–while we were in NY, the injection started to work. I got some good relief. At that point, it wasn’t about running. It was about being able to exist without chronic pain. I called my surgeon and told him I had about 70% relief. He was glad, but told me that that would wear off and I should think about scheduling surgery.

Right at this same time, I was cast as Annie Sullivan in “The Miracle Worker” (the Helen Keller story) at my local theater. I love live theater, and have become increasingly involved in community theater over the past few years. This, however, is a very physical role. I was faced with having surgery immediately and jeopardizing my role in the show, or delaying surgery until the show was over. I, to the surprise of many, chose the latter. I had gotten enough relief from the injection that I could do the show without terrible pain, but people close to me asked, “Are you really going to delay your return to running for a show?” Yes. YES. Running can go fuck itself for once and let me enjoy something else. So that’s the choice that I made. I delayed my surgery by two months so that I could be part of the show, and I do not regret it.

By the time surgery time rolled around, though, I was back in significant pain. I could not wait for him to slice me open and free that nerve…that’s how miserable I was. About two weeks before, though, I started getting nerve pain in my LEFT (non-entrapped) foot. It was only between my third and fourth toes. I knew what it was–a neuroma, swelling of the tissues around the nerve, kind of a mini-entrapment. I had not run a step since August. I had had pneumonia, and basically been completely sedentary. I contacted my surgeon and told him my symptoms, and asked if he would be willing to inject it while I was under for the surgery. He said he would consider it, and examine it the morning of surgery. I had a major emotional break down on this day. I was so fucking angry. I have a nerve entrapment and I’M NOT EVEN RUNNING. I looked around my house, with Tim’s running shoes and hydration packs strewn everywhere, and I flipped the fuck out. I didn’t deserve this. How could this be happening. I hated that I ever ran in the first place (that’s still a true statement–if I could reverse time and never have been introduced to running, I absolutely would). I hated that all these other people who do not love running a fraction of how much I do are able to go out and run whenever they want. And then complain about it. They drop out of races when it’s hot, when they’re tired, when they aren’t going to PR
–things I would never dream of doing, because I have too much love and respect for the sport. I hated that my husband was planning runs around my recovery. When could he get out of the house for a long run–was it safe to leave me two days after surgery? Three? Rage is the only word that describes my feeling on all of it. All these people who tout their stupid stretching, foam rolling, and core work, which I do, and I still end up like this. It was a rough 24 hours.

I was able to gather myself a bit over the next week, and went into surgery again elated that he was going to release the nerve. He examined my left foot the morning of surgery, and found that, yes, I do have a neuroma. He did not want to inject it, though, for fear of increasing my risk of infection from the surgery. Fair enough–he agreed to do it at my follow up. The most stressful thing about the surgery had to do with being weighed. Seeing my weight is my biggest trigger. And seeing it during this time of my life when I’m barely hanging on emotionally would have been disastrous. I had talked to Christy about how to handle this–I was to leave absolutely no room for error. I did as we had rehearsed, and told the nurse, “I know you have to weigh me for anesthesia, but I cannot see my weight.” This was met with, “Oh, sure, you can turn around and we will do it in kilograms.” “I appreciate that, but I am in recovery from a very severe eating disorder. I cannot see it or hear it in any way. My life will be put at risk if I do. Can you assure me that I will not see or hear my weight?” She looked at me with wide eyes, and said, “Okay, yes.” I had to get firm with her. I had to handle it like a medication allergy. She must have understood, because nobody mentioned my weight, and nobody put a clipboard down next to me allowing me to see it.

I went into the surgery suite–a place with which I’m familiar–wrapped in warm blankets and turned on my side. Dr. Porter was there, choosing his music (he has eclectic taste based on my five surgeries with him), and getting me positioned. My anesthesiologist was fantastic. “Are you giving me Propofol?” I asked her. “Yes, I will, but I’m starting with Versed.” I vaguely remember thinking, “They didn’t tell me my weight.” That’s the last thing I remember, as is customary when Versed is involved.

I awoke in recovery to Dr. Porter’s face above mine, and remember him saying “…was very tight in there…like cob webs of fascia…I had to make two incisions…will be better for you, not easier for me, but better for you…a lot of digging…I took a biopsy of the fascia.” That’s all I remember. Then, Tim and Rowan were there, and before I knew it I was in the car on the way home. I had no pain (I had an ankle block), and I slept the entire way home. I had some text conversations with people that I have absolutely no memory of, but I do remember talking to Tim, and him telling me that Dr. Porter told him he had to make two large incisions to get to the entire nerve to free it, and that it was severely entrapped. I slept fine that night, but the next morning woke up to the most intense surgical pain I’ve experienced. I took off my boot, and saw that my dressing was completely saturated in blood. I removed the TED hose and inspected it. I unwrapped it. And saw two huge incisions, totaling over nine inches in length, on the inner side of my lower calf/ankle/foot. I redressed it best I could and took some serious pain medicine.

Later that day, Dr. Porter called me (he always does) and asked how I was doing. I told him it hurt worse than any of the others and there was lots of blood. He told me he was not surprised, given the amount of digging he had to do. He said he couldn’t think of what would cause such a significant entrapment, but that he felt he got it all free. That night, I was in the worst surgical pain ever. I took my pain medicine exactly every four hours, highest dose, and was still in severe pain. I started taking phenergan (anti-nausea med) with it just so I could pass out. It was bad. By Friday, it was more manageable, and I had an appointment with a rheumatologist at IU Hospital in Indy. A few months ago, my primary doctor had drawn an ANA (rheumatoid marker) on me to see if there was any auto immune process possibly causing all these weird entrapments and overgrowths. It came back in the low-positive range, so she sent me to a rheumatologist.

We sat in the waiting room of the rheumatologist, and my foot was throbbing. I had not taken pain medicine, as I wanted to be able to talk to her and hear what she said. I really liked her–she listened to me and understood why I was there. She did a thorough examination of me, and reviewed my  blood work. She noted that my blood work suggests abnormalities consistent with scleroderma, which my mother has. Then she laid it out there–“Your problem is related to overproduction of collagen and hyper-active repairing mechanisms that lead to fibrosis, and then entrapments of nerves and other structures. It is not auto-immune per se, but is in the same vein. Unfortunately, there is no way to treat it. It’s kind of like having keloid scars, only on the inside, and there are no treatments for those, either.”  I think we sat in silence for a beat, before she said, “So when you exercise, you create small amounts of damage in your body. It should be able to adapt and repair without any problem,  but your body doesn’t know when to quit. It forms way too much collagen, thus strangling structures in your body. This is why you had such severe compartment syndrome after running only a short time.” I asked what I could do. She told me I didn’t have to stop exercising, or stop running, but that I would always be at risk for needing surgeries on a regular basis. She suggested non-impact sports, to which I’m sure I turned my nose, and then she said, “You can keep running. The most important thing is that you do it at a low intensity. Not so much how far you go, but how hard you go. That’s what triggers this the most.” Then I asked her, pointing to my boot and crutches, “So this isn’t my fault?” I sounded like a child. “Oh, no. It’s not your fault at all.” I needed to hear that. Since I became a runner in 2008, I have been harshly judged for every injury I’ve sustained. She was the first physician to say, “You can’t control this.”

But I could minimize the risks. If I want to continue to be active (and, let’s be real: compete), I have to come to terms with having surgery on a regular basis. It’s just part of my story. It would be really nice if I knew when these surgeries were going to happen (they appear to be anywhere from 10 to 14 months apart) for planning purposes, but I don’t. All I know is that they will happen, and the best way for me to minimize them is via reducing my intensity (running slowly, which I don’t mind, and on soft courses, which I have good access to). But I can’t prevent them–and that knowledge puts my mind at ease. I have been fighting against my own body for years in an effort to prevent these things from happening, and I always lose. I always blamed myself, and others did, too. No matter how much I cut my mileage, it still happened. The only time I have had moderate success (I stayed injury free January 2012-Oct. 2013, a long stretch for me) is when I ran very slow miles at a moderate level of “high mileage,” which was peaking around 80 mpw. I know that seems really high, but I’ve gone into the 115 range a lot. Add in intensity (speed work), and I’m ALWAYS waiting to have surgery. So, have yet to discuss with my coach, but I probably won’t do speed work anymore (I was doing some very moderate speed work, more like strength work, when this latest happened….so maybe I cannot handle any?). I’m very serious about starting to swim and cycle to compete in triathlons, so I’ll cross train more. I could do all these things, and in 10 months be facing surgery again. Hell, I might be facing it in the next few months, with the neuroma on the other foot. In the past, I have run many races via cortisone injections to get me through until I could have surgery. I had sworn off doing that–but now I am okay with it. If I can time my surgeries around races and make it through on injections, why should I not? However, I am not planning on ever again signing up for races that require registering in advance–EVER.

All I know is that I am an endurance athlete–a distance runner–and I’ll do what I have to do to do what I love as much as possible. I’m not going to cry about it anymore (or I’ll try not to), and I’m going to actively accept this collagen/fibrotic disorder as part of my journey as a runner. I will see how it goes, and get a second rheumatology opinion if I decide to (since I have the blood markers for scleroderma, there is the question of whether immunosuppresive therapy MAY help…we are waiting on advanced blood work to inform that, but her initial opinion was no). I have a lot of work to do regarding my acceptance of other, “regular” runners who don’t have this problem. I will openly admit that I resent them, and that’s wrong of me. Good thing I’m in therapy!

Speaking of, all of this has been an incredible test of my ED recovery. I have not relapsed, but the thoughts are becoming much more difficult to manage. I haven’t seen Christy in a couple weeks due to the surgery, and I need to. The ED-related thoughts I’ve had in the past few weeks are so dark that I don’t dare put them here, for fear of them triggering someone else. Now, more than ever, I want my ED back. Though it’s a horrible disease, it brings me comfort and control. But don’t fret, I’m on top of it. I see Christy this week, and she’ll hear all the dark thoughts. I will stay true to not blogging about my training (that’s a self-preservation thing), but I’ll always be as transparent as I think is helpful about my ED. I know there are others out there just like me.

Identity

Any injured runner/cyclist/whatever type of athlete understands what it’s like to lose your identity while sidelined. For a runner, not running most days, even multiple times a day, is a major shock to the system, and it changes your entire daily routine. You don’t have to check the weather to figure out what to wear, or how much water you need. Is your Garmin charged? Who cares. Where is the Garmin, anyway? And we all have friends that we only see in running situations. When you can’t run, you don’t see them. You’re isolated. You turn off your Strava notifications because you can’t bear to read about other people running. A Gatorade in the fridge makes you cry.  Everything feels out of balance as you begin the process of waiting out/rehabbing your injury. Then, you begin to run again–maybe just a mile at a time–but that identity comes back. And it feels so amazing. Coming back from injury, you savor each step of every run. You never complain about the weather. You celebrate a 5 miler as though it were a 20. And, like that, you’re a runner again.

I’ve been injured lots of times. I’ve run/raced through a lot of them, but four of them have been what I call catastrophic–they have required surgical intervention. Bilateral compartment syndrome, plantar fibroma, obturator nerve entrapment, and post tib tendon repair with FDL tendon transfer. I’ve also been completely side lined by IT band stuff, a groin strain that lasted months, and a metatarsal stress fracture. And as I blogged about last time, I have another nerve entrapment (a bad one) in my ankle, and it will require surgery soon. All this to say–I have a lot of experience with losing and then regaining my identity as a long distance runner.

Now, though, I feel it slipping away a little more permanently. I sometimes have what I would call flashbacks about the last time I was training at a high level. They aren’t like typical memories–they are intrusive thoughts showing me what I haven’t been able to do in over a year. I don’t like them. They don’t make me feel nostalgic. They make me want to scream. I get almost sick thinking of finishing my last 50 or 100 mile race. I’ve felt this way before. But, this time, I’m not spending every ounce of energy I have to try to stay fit or to get back to running ASAP. The reason for that is that I simply don’t HAVE that energy. I love running so much. It is imprinted on my soul forever, and I cherish (bitter-sweetly) every step my feet have ever taken on every single run. That will never change. But I no longer am sure if I’ll be able to do it the way I want to, the way I have, and the way other people do. It’s like watching a piece of me disappear. It’s very painful, and it feels final. I don’t know what’s going to happen. And I don’t need anyone to tell me how sad this is and how I shouldn’t give up. What I do know is that, in the interest of self-preservation, I can’t talk about my running publicly anymore. Not that I did that much or that I expect that that will terribly upset anyone, but I have to intentionally go quiet in order to survive this process, whatever it is and however it may turn out. All I know is that I can no longer handle the pressure of getting through a surgery, back to running, back to racing, and having it all fall apart. I’m also really sick of living in pain.

While I won’t talk about my running in this blog, I will continue to try to provide support and information for people with eating disorders. My ED is under control (though not gone, for sure), but it is also very connected to my running. So I will try to blog when I can do so about things that are strictly ED and not tied to running. And I still love and support runners (I’m married to one!) very much. Enjoy every step ❤

 

Your Story

“Who lives, who dies, who tells your story?” Any Hamilton fans out there? You’ll recognize that line that closes the musical. We all have a story–some chapters are glorious, and others are hideous. To quote yet ANOTHER musical, sometimes I (and perhaps we?) wish that I could “rewrite an ending or two” (Waitress). But all of it–the good, the bad, the shocking, the wonderfully satisfying–make up a person’s story.

I am writing this entry without knowing for sure that I’ll publish it. I don’t actually want to be writing it, but something tells me I should. Today, I sat across from Craig, as he told me “you have to accept this as part of your story.” I was crying, as he had just asked me if I wanted to keep running, or was I done. I had told him that I try to convince myself that I’ll be satisfied if I can just run at all–a few days a week–to clear my head, to enjoy the sport that I love so dearly. But did I want to continue to try to compete? The tears came involuntarily (Christy usually gets my tears). He talked about how athletes he coaches will prep and train and get to a race, blow up, and it all goes terribly. And they keep coming back, and coming back…over and over. “I love that,” I told him. “Then you have to go after it,” he said. “I want to compete. There’s nothing like a finish line.” And it’s true.

So, some context. I’m not sure if I’m what I would call “injured.” To me, I’m only “injured” if it’s a direct result of running. In any case, I began having some medial foot pain near my big toe back in mid-June. I felt it all the time, not just running, and it actually started while I was asleep one night. Keep in mind that I was running about 35 miles a week at this point (that’s very low for me). I continued to run, as it felt like a slight strain. It was diagnosed as a strain by an orthopedist, and I was told to keep running. This pain began to turn into more of a shooting pain in my heel/ankle/medial foot/sole of foot. I felt all that during the half marathon that I ran. I was in the worst pain, however, when driving a car or trying to sleep. I took a few days off and cut my mileage way back. I started doing shorter runs, and the pain was definitely manageable, but I was in absolute agony every other part of the day. I knew this was nerve pain. It felt almost identical to the obturator nerve entrapment I had back in 2014. It’s gripping, shooting, and just horrendous. I began taking Lortab just to sleep. I continued holding my mileage around 30 miles per week doing six 5 mile runs. I could run flat/downhill without much problem, but uphills hurt, so I avoided them. In the meantime, I saw another sports medicine doctor who ordered an EMG, and I also made an appointment with my ankle surgeon, as the area of pain is very near where my surgery was (though definitely not the tendon).

I had about 12 days between all this and my EMG, and I became extremely depressed. I could hardly eat. I spent two entire days in bed. I cried some, but mostly I just laid there, completely silent. I wanted to quit running, to quit my life as I knew it. I don’t mean I wanted to kill myself–I didn’t and never have–but I wanted to be removed from everything, aside from family, that felt normal to me. My dietician gave me a very easy meal plan to follow just to keep me eating, and I somehow made it through this period, but it was awful. I wished that I could go back in time and never have started running. I stand by that statement–I wish I had never started running. But I cannot change that, and am forever aware of the joy and agony it can bring.

Yesterday, I drove to Indy for the EMG, where my results were extremely abnormal (as suspected). I have posterior tibial nerve entrapment at the tarsal tunnel of the ankle, which is also compressing the following nerve branches: medial platar, lateral plantar, and medial calcaneal. They are severely compressed, just like my obturator nerve was. It’s called tarsal tunnel syndrome, and is similar to carpal tunnel in the wrist. It is somewhat rare, though not as rare as the obturator. The doctor who did the EMG looked at me and said “This is very odd. I’ve only seen one true obturator nerve entrapment in my 34 year career, and to have a tarsal tunnel entrapment within two years of that? I’ve never seen anything like that.” I couldn’t manage a laugh or a cry. I think I just kind of shrugged. He removed all the needles from my foot and I waited for him to come back, all the while feeling the burning pain in the bottom of my foot. He told me that my surgeon, Dr. Porter, would likely inject it to see how I would respond, and that I’d ultimately need surgery to free the nerve. I left in silence. They gave me a cute certificate saying that I had had an EMG. I threw it away.

I wandered through the Fashion Mall killing time for my appointment with Dr. Porter. I cried silently. I knew the diagnosis was coming–I WANTED a diagnosis, but I just felt heartbroken. I tried to tell myself that I can still run some. Obviously, something is very wrong with my foot, but I can run. It didn’t help. I know how this goes. I hear how rare my condition is, how no one’s ever seen it, and how they can’t believe this happened. How it’s just SO STRANGE. I understand their awe, but it’s just a reminder that I am different in a way that is keeping me from doing something that is deeply a part of me.

I saw Dr. Porter, who thinks this is likely related to the surgery (scar tissue, possibly some overpronating to which my body overreacted by forming a ton of scar tissue/swelling, as it did with the obturator and a million other things). The reason didn’t really matter–he would inject it, but didn’t expect an injection to cure it permanently, especially given the severity. He said I would most likely get relief for 2-3 weeks. There was a chance, he said, that I could get up to 3 months of relief, in which case he would do a repeat injection to get me 6 months of relief and through my fall races. But, ultimately, I’d still need surgery to release the nerve and all its branches from the fascial restrictions. So here I was again. He’s operated on me three times already. I couldn’t really respond. I just had the injection and went home, not even actually able to think of anything other than that I should quit running entirely. I have done the whole dance of being injected to get through a race in order to make it to surgery–twice. It’s very, very stressful. The injections have to be timed well. It could lose effect before the race, leaving you in pain on the starting line despite all the training you’ve managed to do. I couldn’t fathom going through that again.

I saw Craig today and told him about all that I learned yesterday. And that’s when he asked me that question, about did I want to run anymore. At first, I thought maybe he was suggesting that he thought I shouldn’t. But he just wanted my reaction so he could know what to say, which was that I had to pursue it, and just accept this–all this and all the other shit–as part of my story. Just like my ED is part of my story, so too is this. But I don’t have to give up on racing ultras again. I’m not overtraining, I’m eating, and I’m recovering. And yet I continue to get spontaneous nerve entrapments. There is something else at play here, something with my body’s response to any kind of trauma and subsequent healing. I mean, my body grew a tumor made of fascia on the bottom of my foot!! With all of these surgeries I’ve had, I’m always told how curious my injuries are. So they fix it, and that’s the end. No one has looked at WHY. Why does this keep happening? Even with my mileage high, how does an obturator nerve become completely entrapped with no direct trauma? Now I’ve taken out the variables of overtraining and nutrition, and it happens again…severely? So I’m going to pursue finding out if something is wrong with my connective tissue–namely my fascia. I have a positive ANA, indicating the possibility of something auto immune. When I have the time and energy, I’m going to find an excellent rheumatologist (think Johns Hopkins or Mayo) who is interested in solving a puzzle. If it’s not auto-immune, I know they’ll point me in the right direction. But I’m on a mission to find out what’s wrong. Even if it can’t be fixed, I at least know what to expect of my body.

Back to Craig–I explained to him that I don’t have the energy or stamina to do the patch-with-injections, even if I did get a couple months’ worth of relief. He agreed with that wholeheartedly. I told him that Dr. Porter said I could still run, but that I felt like, unless I got some relief from the injection, about 5-6 miles was my limit. It didn’t seem logical to push myself through pain if I was just waiting for surgery (which can’t be done til the fall, since I had an injection…it can affect wound healing). Craig agreed that I could run what was tolerable for me, up to 30 miles a week. Then I said, “Maybe I should try a triathlon.” “I was just going to mention that,” he said. I cautioned that I have done one sprint tri, and I’m a terrible open water swimmer. And I don’t have a bike. I’m decent on the bike, but I can’t drink water while pedaling. He assured me I could learn all that, and he has a bike I can use. And I wouldn’t have to worry about the run–the mileage I’m able to do, 25-30 miles a week–would be plenty for an Olympic distance triathlon in a couple of months. “So then it won’t be wasted. I can train and compete.” That felt good to say. But then I quickly told him I felt like I was giving up on ultras, and I don’t want to. He told me we aren’t giving up, but we are where we are right now. We’ll get the ankle fixed, I’ll pursue medical assistance to see if I have a connective tissue problem, and we’ll start over. Whatever happens is part of the story, but we won’t quit. And, in the meantime, I will compete. I don’t believe that I’ll fall in love with triathlons, but perhaps I could be wrong? I’m definitely a runner, but at my core…I think I am an endurance athlete. Running just happens to be that at which I have endured. Even if I never do another tri, I am excited to pursue one right now. Craig even says he thinks I can build up to half Ironman and full Ironman, even if I have to keep my mileage low because of my fascial entrapment issues. I think an Ironman is definitely comparable to a 50 miler (and would take me longer).

Let me say once more that I’m not giving up running or ultra running. I’ve only raced two half marathons, three marathons, two 50s, and a 100 (and a handful of 5Ks). For someone who’s been running seriously for almost 9 years, that is very little racing! ONE of those races (my first 50 miler) I feel like I can say I went into healthy. I wore a TENS unit (two, actually) for my first marathon, I had sciatic nerve entrapment at the piriformis for my second one, and a knee injury (which was, admittedly, a normal injury) for my third and final marathon in 2012. Oh, and I ran Boston with an IT band injury in 85 degrees. I had a fibroma on my foot for my second (and best) 50 miler, which was surgically removed right after. I ran my 100 miler with a torn post tib tendon.  And I ran my recent half marathon with tarsal tunnel syndrome. I am not becoming one of those people who says “running is just too hard on your body, cross train!” I will never be one of those people. Running is a natural, amazing gift. I want it to continue to be part of my life very, very badly. But I’m taking a step back to say–okay, what’s wrong with my body? Why does it react this way? I am reviewing the literature and looking for specialists, and meanwhile choosing not to try to continue training at a high level with this current entrapment, nor to try to piece together a race with cortisone injections. I am absolutely exhausted by that routine.

So I don’t need or want people to say to me that I’ll come back stronger, or that triathlons are a better choice for me, or that I’ve done all this to myself (I haven’t). I’m not switching over, but I’m going along with my story, and still competing. I am not excited, but I am (almost) at peace. And for now, I’m satisfied with that.

 

 

Reporting

Runners do this kind of weird thing called race reports. I’m not knocking them–I love to read (and write) them, but I imagine that they are odd and uninteresting to non-runners, or at least non-athletes. They range from pretty broad (I had a great/awful day!) to very, very detailed (what the person wore, the course, how many calories in, etc.), and their goal is to communicate the experience of a race which happens to be a very personal, meaningful experience. Runners typically train and build up for a race for months, training day in and day out, managing injuries, balancing intensity and recovery, and it all culminates in a race that is anywhere from a few minutes to many, many hours. It’s a big deal.

I sometimes catch myself saying that I’ve raced a lot, but, actually, I haven’t. I have signed up for many races, and probably run less than half of those due to injury. The last time I raced was Kettle Moraine 100 last June, and before that I hadn’t raced since November of 2013 (JFK 50 miler, which is still, I think, the best race I’ve ever run). I had three surgeries from January 2014-August 2015. THREE! The last time I raced on the road was November of 2012, when I ran my PR marathon. The last time I raced a half marathon (and I’ve only run two), was January of 2012.

Until today. I raced a half marathon today. I hesitate to call this a race report, though. I’m not going to focus on splits, nutrition, elevation, and all the stuff you look for in a race report. Rather, I’m going to tell the story of what it means and feels like to be an athlete in recovery from an eating disorder returning to her sport. I hope that it helps someone else like me going through a similar experience.

Craig wanted me to do a fitness test (which is just code for run hard even though you’re not fit) to see where I am as we start actual training, and thought a half marathon would be a good race distance. As a reminder, I’ve been running for only 7 weeks since my stress fracture healed. The first two weeks of that, I ran 10 miles TOTAL. Since then, we have very cautiously built mileage, with very little intensity. Prior to the stress fracture, I had only been running 8 weeks (after having been off 5 months for ankle surgery). So, I was not well trained to race a half marathon, or anything, really.

I don’t like the half marathon distance at all. Nothing against people who do, I just don’t. I don’t feel it’s my strength. That may just be because I’ve never focused on it, but I don’t like it, and I can’t imagine I’d ever choose to race one. I very much trust Craig, and that’s the only reason I raced this distance today. I’m kind of hoping he never has me do it again. Anyway–for the last four years (when not injured), I have focused on running a lot of long, slow miles. No intensity. Just plodding along every day for a long, long time. If Craig had said you can either race a half marathon or run 25 miles at a 9:15 pace, I would have chosen the 25 without any hesitation. Long and slow has become my comfort zone. But, alas, I wasn’t given that choice, and I don’t have any business running that far right now anyway. So, a few weeks ago, I set out to find a half marathon. Not an easy task in July, unless you want to roast. I found one in Battle Creek, Michigan, where it was likely to be at least tolerable weather. My  dad decided to go with me and run as well.

I have been majorly stressed out about this race. Craig put no pressure on me, and he just needed some data. I totally get that. But I’ve been ruminating about how awful it was going to be, how I would fail, and how I wished I could just go do a really long run. I worried about other runners at the race judging me, noting my new body (keeping in mind I know none of these people), and also how slow I’d be. And then I worried about disappointing Craig. That’s nothing personal about Craig. That’s about my perfectionism in relation to always wanting to do exactly what people expect of me, or perhaps even more. I commonly have thoughts about Christy, Craig, and Jessi (now Carrie, Jessi left) being disappointed in me or thinking I need to do something differently/better, but they fear I’m too fragile to tell me. Ed sometimes makes me imagine side conversations between them in which they talk about how overweight I am and how I’ll never be fast again. Of course they do not do that, but it’s a constant battle in my head. I was pretty afraid that Craig would see my race result and silently think, whoa, she’s slow/bad/not trying/not good enough. I mentioned this to both him and Christy, and they reassured me, but I couldn’t let it go.

I always race with a firm plan, a goal, and I am NEVER under trained. Over trained? Maybe. But if I actually make it to a start line, I have trained really hard. I didn’t have the luxury today of knowing that I had put in the work. I mean, I haven’t. I truly haven’t. My body is also totally different. I asked Craig to tell me exactly what to do, and we settled on going for a certain pace (I’m leaving out numbers not because I mind that people know my time/pace, but because the numbers are irrelevant to this particular report, and could detract. You can look up the results on the Battle Creek Half Marathon site if you want), with HR check points. This meant that I would go out at a certain pace for five miles, and then either slow down, hold, or speed up based on my HR at that point. I was supposed to keep an eye on my HR through about 10/11, then just run as hard as I could. I went over and over these “rules” on the way to the start line this morning (I have OCD, too, so rules are a thing for me). The instructions were not difficult or complex, but I couldn’t stop repeating them in my head.

We got to the race this morning, and I felt very out of place. I don’t race on the roads much, nor this distance, and I hardly ever race anyway. I had totally forgotten what it feels like to line up for a road race. I was very self-conscious about my body. I tried not to look around me, and I just kept my head down in the corral, feeling everyone’s eyes on me (and they weren’t on me, of course). As I waited for the start, I repeated the instructions to myself over and over and over. I could hear Ed telling me not to screw this up, and that I’m way too heavy to run what Craig told me to. I almost jumped out of the corral right then. I’m serious. I willed myself to stay there, and I was so fucking scared. Do you know how many times I’ve run 13.1 (or more) miles? Many, many. I haven’t raced it much, but I’ve certainly covered that distance more times than I can count. As the national anthem played, I was completely petrified. IS THIS ACTUALLY HAPPENING? I’m not ready (just like the kid in What About Bob says before being plunged in the water). I’m not trained, I’m not ready. I looked back to see if I could see my dad. I couldn’t. I began to fear I’d disappoint him too. In the 10 second count down to the gun, the only way I can describe how I felt is that I felt desperate to be rescued. I wanted out. Here I was, finally able to race, numbered pinned on, and I wanted OUT. I bargained with myself that I would at least start. Just put one foot in front of the other a mile at a time. The race started.

As soon as I started running, I felt considerably better. I still felt awkward and out of place, but the absolute terror was gone. I became focused on what I was supposed to do, and took note of how natural and also strange this felt. The first three miles came and went quickly. I didn’t talk to anyone. I didn’t really look around. I just ran. I tried to relax. I felt like a teenager going into a new middle school for the first time. I didn’t want to be noticed. I monitored my watch closely to make sure I followed instructions. By 4 miles, I had gotten into a rhythm and had begun to relax a little.

I still didn’t talk to anyone. People would go by or I’d go by them, and they’d say “good job.” All I could do was acknowledge with a wave. That was weird. I ALWAYS return encouragement, even when I’m dying. I felt like I was in this battle–this internal battle–and they were merely peripheral. I typically race with my chin up, looking for people who may have gone out too hard, finding people to catch, etc. Not today. This felt very, very about me. At 5 miles, my HR was a little high. I followed the rules and pulled back slightly, but knew that I would let it drift up soon. A little after 5, as I was running by the thunderbirds (which is apparently a big deal?), I began to segment the race in my mind. I would allow my HR to drift to a certain point between miles 5-8, then from 8-10, and wouldn’t worry about HR after 10.

Around 6 miles, I began to feel like I belonged here a little bit. I wasn’t doing anything spectacular, and was running way more slowly than my PR pace, but I started to feel like I deserved to be there racing. I was running at an uncomfortable pace, but it was manageable at the time. Around 7 miles, people in front of me began to struggle, and to come back to me. This is a normal time for this to happen, and I suddenly remembered that. Like, oh, yes, this is how this goes. I can’t explain it other than to say it was like suddenly remembering the name of a movie you couldn’t think of when you were discussing it with friends, only to remember it at 3 am.

The course had a lot of turns. I mean A LOT. As I hit 8 miles, I made a turn that allowed me to see the leaders. I felt a pang seeing the lead woman, as well as second and third place. I felt like I would never lead a race like that again, never be competitive. I pushed those thoughts aside, and reminded myself the purpose of this race. We needed data. I was starting to suffer significantly right after 8 miles, and my HR was in the upper 170s/low 180s. My breathing had also become quite rapid. I really didn’t want to see 180s until mile 10, so I dialed it back just slightly. We hit a large downhill, and I bombed down it. I passed three people going down that hill, and was reminded that many runners don’t know how to run downhill. That made me feel like I was actually racing.

After the downhill, came a steep, though not very long, uphill. I kept my effort even up the hill, but once I got to the top of it (mile 9), I felt like I just couldn’t recover. That’s when my suffering went from significant to overwhelming, and I again remembered, “Oh, yeah, at some point it starts to be quite unbearable.” I also remembered that, once you get to that point, it doesn’t get much worse. I caught myself thinking about how four miles was a LOOOOONG way when you’re working this hard, and then I, in the midst of substantial physical discomfort, felt really, really happy and excited. I realized that, no matter my time or my pace, I was fucking THERE. I was doing what runners do. I was pushing myself, suffering, and willing myself to keep going. That’s what it’s like to race. I haven’t felt that (very unpleasant) feeling in a very long time, and the meaning of it hit me all at once.

If I felt bad at 9, I felt even worse at 10. Miles 9-11 were pretty ugly, with the HR north of 185, and I just kept telling myself keep moving, keep moving. In my head, I said the things that I say to Jo when I pace her in halves. I suddenly had a pang for Tim, because I like when he paces me. I wasn’t looking at pace (I couldn’t maintain a higher HR much longer, so I had to go by that), and I hadn’t even looked at my total time once. Once I hit 11, I began to fartlek, meaning I would speed up, slow down, speed up, slow down. God, I was in misery. My effort level was so incredibly high. I passed a couple of people, and was passed by a couple people, and found myself soaking in the feeling of mutual misery that runners at the end of a race always share. All I wanted was for this to be over, but I silently told myself, “you’re doing this!!” while Ed said, “you’re doing this very slowly.” My voice won out, though.

When I hit 12, my legs were toast. My quads burned and hurt with every step. I was grunting. Spectators were cheering us all on, telling us how close we were. It didn’t feel at all close. Every fiber of my body was telling me to please stop. It’s been so long since I’ve had to run through sustained discomfort like that, that I kind of forgot how bad it is. I was working so hard that the thought of acknowledging a spectator or taking a gel (which I had carried but forgotten to take) or picking up a cup of water was too overwhelming. Within the last mile, there were SO many turns. At least eight of them, and those started to really piss me off. I was no longer worried about my body, or my pace, or what people thought of me. I just wanted to be done. I had no idea what my total time was, but I knew that I had done what I was supposed to do. Runners who had already finished were out on the course, cheering wildly for me (and all of us). They told me I was so close, to hang on, to finish strong, to kick some ass, to use my arms, and, finally, that there were only two turns left.

I was maxed out in terms of effort around 12.5 miles, but still able to appreciate what wonderful humans most runners are. We love to encourage one another. Not a single one of those runners on the course watching, or even those who passed me or whom I passed, thought for one second about how fast or slowly I was running, or how much I weigh. They whooped and yelled and told me to push it in. For a moment, I remember thinking, “Runners are really forgiving.” Then I realized that was a disordered thought–for what do I need forgiveness? Eating? Being slower than normal when I haven’t had any consistent training? And then I heard the sweetest sound in the world–the sound of a finish line. I couldn’t see it, but I could hear it, and there were spectators everywhere. I turned left, then right, and then there was the finish line.

It was less than 0.1 miles, and I could see the clock. And people screamed for me, they pumped their fists, and said, “Yeah, girl, GOOO!” I heard my name being said by the announcer. “Here comes Wendy Miller from Bedford, making it look EASY!” I remember thinking that was a completely false statement, as my HR was literally at its max. I went as hard as I could, and I hit the mat more than 10 minutes off my PR. I stopped my watch and walked unsteadily to a volunteer who put a medal around my neck, smiling, and saying, “YOU DID IT!” Tears filled my eyes. I felt awful, like I needed to sit down, and I did so on the curb. And I wept silently, because I was so deeply, deeply appreciative to be back in my tribe of people. That may sound silly, but it’s true. I’m doing what runners do. I’m part of things again. I managed to feel a little proud of myself for doing something that had me so terrified. I poured water over my head, stood up, and promptly felt a cramp in my adductor. See? I really was back.

I went back out on the course to cheer for my dad and all the other runners, and I did for them what they had done for me, and what runners do for each other time and time again. I cheered, and I told them how many turns were left. Dad finished, and we hobbled to the car, both satisfied to have raced that morning. My next race is Sept. 4th and, thankfully, is a 50K (31 miles). I still don’t like the half marathon.

Picture below of me and dad with our medals.

 

Forget all of it

I haven’t blogged in a while, as I was waiting for a moment to seem blog-worthy, and I think I’ve finally arrived at one. I am now in the phase of recovery in which I can survive pretty intense triggers. I can try on a dress that won’t zip, panic, but go on with my day and eat. I can see old pictures of myself, feel a pang, but move on with my meal plan. The one trigger I haven’t yet faced is seeing my weight. I’ll be ready to do that when my team says so. Where I am now is…I’m a female distance runner who is beginning to train while, for the first time, in a fueled, weight-restored state.

I absolutely feel as though I’m in a new body. Everything is different. Here is what I remember running being like before I was in recovery: I could run forever, and my heart rate often wouldn’t go above 135 (it would maybe hit 140 on a 30 mile run and I commonly averaged in the 120s for 20 milers), I often dreaded my runs, I often felt weak on my runs, 8:30 pace was easy, 6:45 was tempo, and I could run a 5:35 mile. I felt lighter, and uphills were my strength. Most of the time (read: all of the time), something hurt. I felt comfortable running in a sports bra and shorts. I could win races. While disordered, I ran a 19:01 5k, a 1:30 half marathon, a 3:16 marathon, an 8:19 50 miler, and 25 hour 100. I could run 20 miles at an 8 minute pace in training. It was nothing for me to run with groups of men, and be faster than all of them. I was usually injured and unable to race, with most of my races being at least one year apart. I didn’t run most of the races I signed up for, and when I DID race, it was usually to get through the race, with surgery on the other side. From 2009-2015, I had four running-related surgeries; three of those were in 2014 and 2015. I was constantly afraid of being hurt, and very often frustrated and depressed about my running and inability to get to start lines.

Here’s how running is now: My HR gets up to 182 running a 7:30 pace. My HR is commonly in the 150s and 160s during easy runs. 7:20-7:30 is my current tempo pace. 9:20-9:40 is my easy pace. Anything sub 7:45 feels like a workout. I won’t run without a shirt covering myself. Hills are hard. A HR of 180 feels like a HR of 150 used to, and a HR of 150 feels like 120 used to. I do not feel very light. I think I’d be lucky to run a 1:40-1:42 half marathon right now. I could maybe break 22 in the 5K. I don’t think I could even complete a marathon right now. I do not dread my runs, and I do not feel weak running. I feel slow, to be sure, but not weak. My HR goes up with ANY change in pace or elevation. I don’t have pain when I’m running. I enjoy running.

Now, I am also coming off of a stress fracture. I have only been running for 5 weeks since then, and I had a 4 month lay off before that due to ankle surgery. From August 2015 to March 2016, I only ran a few weeks. So some of this is being out of shape. However, I’ve come back from many, many, many injuries and lay offs, and this is different. Way different. I have talked to Craig about all this, particularly my HR. My HR was not this high when I first started running and couldn’t go more than 5 minutes on the treadmill. I explained that my HR has never gotten this high outside of a race (the highest I’ve ever seen it was 186 finishing a 5K at a 6 flat pace, and I was basically completely disoriented). I also explained that, I seem to be able to run with my HR at 170-175 for a lot longer than I would expect–it certainly doesn’t feel like it’s within 10 or so beats of my max. It feels more like 150 used to. I told him how my resting HR used to be 31, and I could run a 20 miler and keep it in the 120s, and not be able to get it up at the end of a race (even though I would try). I thought this was purely a measure of my aerobic fitness. “You had no metabolism, your HR COULDN’T go up. Now, all systems are go.” It was like an epiphany. So THAT’S why my HR was always freakishly low…and then I realized…shit, that is really bad. My heart’s electrical system was at risk. He said, “This is why people with eating disorders drop dead. Their hearts cannot perform.” That was a somber moment for me, as I became acutely aware of how sick I had been…and also how blind to it I had been.

Okay, well, then why am I so slow? I told him how everything used to be, just as I wrote above. “Forget all of it,” Craig said. “What?” “Everything about running that you remember. Everything about training, and about racing, forget all of it. You are in a new body now, your body functions completely differently. It actually functions.” I lamented that I was just going to be slower. He brushed it off. “No, you’ll be faster.” I didn’t (and still don’t) believe him. He told me he’s been doing this 20+ years, and that I’ll be faster. I told him I felt like I can be faster at 50 and 100 milers, but not the marathon and shorter. It’s just too hard and I’m too heavy. “You will be.” I don’t really want to race those shorter distances, but he is making me (well, not making, of course, but that’s what he wants me to run a half and a full or 50K). I told him I’m going to be so embarrassed at how slow I am. Like, I used to be fast. “When you could race, yes.” He again told me I’d be faster because I’ll be able to train consistently for the first time. “You are a brand new runner starting out. That’s the truth of this.” It’s hard to imagine that I’m a new runner, but my god it feels like it.

I absolutely trust Craig (he’s really, really good at this, and he has a PhD and is a runner, so..that’s street cred to me), and I’m doing exactly what he says. I don’t know if I’ll ever be as fast as I was, or, as Craig predicts, even faster. I will not say I don’t care, because there is a part of me that desperately wants to be. What I can say, however, is that if I have to be slower to be able to train and race consistently, without major layoffs forced by injury, I’ll sign right up for that. If I never PR again (though I think I can in ultras), but I can run my ass off, I’m okay with being slower. The price I have paid to be faster is not worth it in any way. With that, I can tell you what my race calendar looks like this season, with all of it aiming toward the 50 miler.

-June 25: Half marathon time trial (yes, I am running a HALF MARATHON time trial because I cannot find a race that works with my schedule). This will be a horrible mess of suffering and hating life, but Jo is going to bike beside me and support my run.

-September 4: Lake Michigan 50K. Top 3 is goal (4:30-4:40…half trail/half road in Milwaukee)

-October 1: Bedford Half Marathon (goal is to be first Lawrence County woman. I have never run this race due to injury!).

-November 12: Tunnel Hill 50 miler Goal: top 5 and 7:45

If none of these races go well, and I don’t meet my goals…all I care is that I can line up and compete. I can pin my number on, pee beneath a trash bag, be nervous as hell, and race my heart out. Then recover and do it again. Maybe Craig is right and I’ll be faster. Even if I’m not, I will finally be able to have the joy of running in my life consistently. And that’s worth it.