Disabling the Disability

You know, it’s funny. I commuted into Boston today to work out of our corporate headquarters. I took the train, and then walked from the train station about 10 blocks/a half mile to our office. As I got ready in the morning, I knew I had to wear sneakers because of this long walk. I put my sneakers on thinking “Will I ever be able to make a decision without weighing the effects it will have on my hips?” I thought that even though I’m surgically “fixed”…I’m not really, technically, fixed. I guess that even after a surgery like this, us hippies always have to worry about the fatigue, and the arthritis damage, and all of our little dings and dents we’ve gathered along the way. While I feel great (and I really do), I think everyone can admit that we still seem to have some minor limitations. And it got me to thinking, even after having a corrective surgery, do we still carry the burden of a “disability?”

Before surgery, it look me a long time to admit that I have a disability. It seems like a word that’s meant for people who are truly worse off than I am, or was. I always felt like saying that I have a disability was me trying to make excuses for myself. As my pain progressed, everyday things got harder and harder for me. I began to face that fact that admitting that I have a disability is not making excuses, it’s accepting myself and my limitations for who I am and what they are. And that is far more important than pride. Mentally and physically, that was the hardest thing for me to admit.

Then, I settled into that definition. I came to terms with it. And, as I planned out the surgery and recovery, it really came to be a part of me and I embraced it. I knew my limitations and I could accommodate them. It was certainly a hard pill to swallow, but I felt as though the best way to deal with the situation was to face it head on. And so I did. Throughout PAO and scope recovery, I pushed myself when I needed to, and I cut myself slack when it was necessary. I lived with the hope that with every passing day, I was leaving my “disability” a little farther behind. 

As time went on, I got stronger; I became mobile and agile, and I became essentially pain free. And after a long while, I really felt great. And I still do. I feel better than I EVER have in my life. But, the reality is, I will never, ever be 100%. None of us hippies will ever truly be 100%. I just don’t think it’s possible. 

We all have our creaks and our cracks, and we have our aches and our pains (some worse than others). I have “start-up” pain in my left hip, and I still have arthritis pain in both hips most days. It’s not terrible, and it’s not constant, but it’s there. I guess my question is, we can recover from surgery, but do we ever recover from our “disability?” I was probably insatiably optimistic to think that I would wake up one day and feel like I never ever had any hip problems at all. I’m learning more and more, as time passes, that I will never truly shake myself of this feeling of being “disabled.” Even on my good days, where I am predominantly pain free, I worry about my hip. Mostly unnecessarily, for sure, but the slightest bit of worry is there.

And what’s worse is that these are the best days for me and my hips. They are great days, and I am thankful for them. I am doing things every day that I wouldn’t have been able to do effortlessly pre-surgery. However, I can’t help but have this nagging feeling in the back of my mind that it’s really kind of all downhill from here. These blue skies and tranquil waters are available for a limited time only. It’s like a ticking time bomb.  When will the other shoe drop?

Anyway, I hate to sound dramatic. It’s certainly not like I’m feeling this way every day. This morning, as I planned to wear sneakers because of the long walk, it just kind of struck me that there really is no way around these hip thoughts. And even though I feel better, I will never feel totally “normal.” I won’t ever be able to be totally carefree about my hips and how I use them. This is a fact of life for us hippies. 

However, I insist to always look at the positive. I still am thankful, every day, for the PAO surgery and my recovery. I am thankful that I can walk pain free, every day. I’m thankful for Dr. Schiller, and University Orthopedics. I’m thankful for Rhode Island Hospital and their fabulous care. I am thankful for Lepre Physical Therapy, and for Tom Almeida, who was a Godsend to me during my recovery. Truly a friend and huge supporter. I’m thankful for a one-of-a-kind husband who is irreplaceable. I (literally) could not have done all of this without him. And I’m thankful for all of my family and my friends.

I have a good life, and there’s no disability that will ever change that.

Moving Forward, Looking Back.

Finally! Today I finally got a respectable answer on what is going on/a plan of action.

It’s been two weeks since the MRI and while I know that Dr. S’s office is very busy…a girl needs some guidance and reassurance here and there!

I had my MRI on the morning of Friday, April 25^th. That afternoon, Hilda from Dr. S’s office called me to tell me that the preliminary report came back. The good and bad news is that the MRI was completely clean. No issues whatsoever. Which is great news, but also baffling. She said that everything on the MRI was perfectly fine in the hip area, but that I had a cyst on my right ovary and I needed to call my doctor to have that looked at. (Seriously? “You can stop worrying about one thing, but here’s another!”)

Hilda explained that this was just the preliminary report and that Dr. Schiller wanted his preferred radiologist to look at it before we decide on any plan and that they would call back. So I waited and waited to hear back about this…and I just heard today (after several check-ins and voicemails on my part)! It was a pretty aggravating two weeks....yikes. I don’t usually ever have a bad thing to say about that office…but I was really stressed about this whole situation.

Anyway, I had PT that afternoon of my MRI. I met with Val and she stretched me, massaged the muscles and asked me to go through the stretches she had given to me. I talked to her about the pain I was having after doing the stretches (the pain I described in my last post). Val said that it seems like the muscle group is just so tight and strained that it doesn’t want to relax with any amount of stretching at this point. So, we have to start with some very light, “easy-does-it” exercises. We are now doing exercises that don’t require me to work against gravity; just two different exercises with a stretch or two at night for now, until I feel like I can handle more. I haven’t been to her office since the MRI day, since she was away for a little while and my week this week has been crazy. I have another PT appointment next Friday and another the Friday after that. Dr. Schiller says he wants me to continue PT for at least a few more weeks to see if it gets any better. If it doesn’t get better than we will have to re-assess at that point.

Additionally, I’ve been to the doctor about the cyst on my ovary and my doctor is not concerned about it at all. He looked over the MRI and said it’s so tiny that he’s not sure he would have even mentioned it if he had seen it. He is fairly certain it’s a follicular cyst, which is very common. Just in case, we are doing an ultrasound on Tuesday to be sure.

As far as the actual psoas goes, it’s been doing okay. I haven’t had a real spasm in just over two weeks. The new exercises make it unhappy but I do feel like they are making it a little better. Slowly, but surely. I haven’t been doing much in the way of strenuous activity so it’s had some time to rest. Yesterday, though, I was in the field doing some heavy lifting. By the end of the field visit, I could feel the wrath of the psoas. It was really achy and tight…throbbing even, like it might want to spasm. It didn’t spasm, which is huge. By the end of the day, it had calmed down a lot and was mostly just achy. Today it feels completely fine, again…which is great. I would think that the lifting definitely isn’t great for it, but I honestly feel like once we get PT going on a regular basis we will be moving in a much better direction. Three weeks ago, I wouldn’t have even been able to lift anything heavy without some serious pain. Yesterday felt like a step in the right direction. We will have to see how the next few weeks go.

To end, I'll just say that these are the most frustrating types of issues...are they not? You and your doctor obviously know that something is wrong...but you have no physical evidence to tell you what it is, exactly. My muscles feel as hard as a rock, but the MRI shows nothing wrong at all...so what is going on!? These "let's just wait and see if you get better" courses of action are the absolute worst. I know there isn't anything better that Dr. S can do at this point in time...but I can't help but feel like we're not doing anything about it at all (even though that's not true). The patience that I harp on ALL THE TIME in regards to this recovery is seriously waning. I just want to be better and normal and done with all this! I'm a year and a half out...I shouldn't be dealing with this, seriously! 

Rant over...I promise. Lately I do feel better, so I am focusing on that. But I can't help but think about how much these spasms hurt, and how they impact my life when they happen. It's a helpless feeling when you can't move at all without severe pain. I'm in a strange limbo right now where I'm trying really hard to focus ahead and move forward...but I'm also stuck looking back on the past few weeks. What if this doesn't get completely better with PT? What if I keep getting these spasms at seemingly random times? What happens at that point? Do we go in surgically and see what's going on? Do we take out my surgical screws? What if THAT doesn't work? Will I be able to carry a little one on this psoas? Right now, I certainly don't think I could. Who wants to be super pregnant with major hip spasms that render you immobile? Not me! I don't even want them now, never mind when I'm in the middle of a pregnancy. Talk about stress. 

There's no timeline for this...and that drives me crazy. It's a waiting game...and I just have to keep being patient....

I’ll keep you posted on my PT as we move forward. Just another small roadblock, but I’ll figure my way around it!

Thanks all,

D

Wallows and Sorrows

I had a day yesterday. A DAY. 

I’m just going to warn you that this post is full of whining and wallowing in sorrows and I HATE being that way. While I’m feeling way better now and far more like my optimistic and enthusiastic self…yesterday I had a bad, bad day. And while I’d rather just erase this day from my memory and move on with my life, this blog is a place to document the good, the bad, and the way ugly.

To start, that morning I had to drive an hour away to a field site where I had to spend most of my day. Because my prescribed Valium makes me feel like an astronaut floating through space, I thought it best to not take this pill and then drive a bazillion miles south down a 3-4 lane highway. I felt fine all day, much to my surprise. It felt a little, teeny bit tight, but mostly fine.

I had my Physical Therapy appointment scheduled at the hospital for yesterday afternoon. This was with the therapist associated with my surgeon’s office. I had intended to take my Valium when I changed to go to the appointment. THAT plan got foiled because we ran late in the field and I had to run around like ninny just to make it to the hospital in time for my 2:45 appointment. (Which I then had to sit and wait around for another half hour for them to be ready to take me…but I digress.)

Val, the very nice lady who looks very much like Sophia Bush, took me in and asked me 7 million questions and wrote notes all over my form. They all looked like chicken scratch but they apparently meant something to her. Then the fun stuff began.

She took all sorts of measurements of hip angles and ranges of motion. She took some lying on my back and my belly, an even on each side. She took measurements of both hips for comparison. There was lots of stretching and pushing and pulling. Then she started showing me “light” stretches to focus on the psoas/hip flexors. At that point, I could feel things getting a little angry in there. Just liiiiiittle bit angry.

She asked me how I thought the spasms might be triggered, so I told her that every time they’ve happened so far, it has been directly after sitting down. The folding of my torso and the contracting the muscle together seems to be what’s causing it (in my non-medically-trained brain). So she seemed intrigued but not surprised. Innocently she said “Okay, so just do me a favor, stand up and then bring your leg up into a marching motion.” And….BAM! Muscle SPASM OF DOOM! I immediately panicked because I knew I was a half hour from home, I had to drive my car, and I immediately couldn’t even walk or move. The therapist and I instantly tried working on it to get it to calm down.

We heated it, she did direct pressure and even massage, we stretched it…nothing helped. It was a freaking scene in the clinic because she had to help me with everything I did. She had to help assist me to the chair because I couldn’t move the leg, she had to get the heat for me. She had to help to and up onto the massage table while I writhed in pain. It was so embarrassing. And of course everyone watched in horror (probably not…but it sure felt that way). I was there for forty-five minutes with her trying to get it to calm down so I could at least leave. Finally we decided that I HAD to take the Valium, so she got my bag and some water for me. Luckily I had it with me.

After taking the pill it was like a twisted race against time. I needed the valium so that my leg could feel well enough to walk to my car and drive, but my Valium makes me pretty out of it and I didn’t feel comfortable driving while on it. What a mess.

When the spasms lightened a little, I was then able to at least move my leg a little bit so that I could walk if I crouched over and took tiny steps. I decided to leave at that point…there was nothing left they could do for me and as long as I could get myself into the car and comfortable, I was confident at that point that I would be okay to drive. As I was leaving, I bumped into my surgeon’s assistant, Hilda (aka nicest lady ever). She was so worried about me because I obviously looked like a hot mess. She didn’t know if I should drive like that. She lives in the town next to me and she wanted to drive me to a meeting place where Matt could then pick me up. I wanted to take her up on it, but the problem was that I was not leaving my car in the middle Providence overnight. I might as well leave a big sign on it saying “Please steal me!”

Hilda walked me all the way to my car, during which time she told me she really wants me to get a permanent handicapped placard. She told me to fill the papers out today and to send her the paperwork. She also said she was going to tell Dr. Schiller about the whole thing (I felt like it was when my mom used to say “Wait until I tell your father about this!”)

It took a few minutes to get into my car because of course I parked my car right next to a giant column and I couldn’t open my door very far. That made an already difficult situation even more difficult. Seems so silly to read that, I’m sure, but I was so stressed out from the mess of a scene at PT, then seeing Hilda and having her dote all over me and telling me she’s going to talk to Dr. S, and the tension from the spasm, this stupid column next to my car was like a monumental issue at the time.

I finally got myself into my car and found a position where I was actually pretty okay. I wasn’t irritating the spasm, and I could move my foot back in fourth to the pedals with minimal pain. It was obvious the valium was working and I could drive home. I just took it slow.

As I drove home, all of the everything that had happened over the last couple hours really just hit me all at once. I was overwhelmed and embarrassed. I was annoyed, aggravated, and most of all, severely discouraged. I kept having these awful “These spasms will never go away!” thoughts and the “I’m going to have to take Valium for the rest of my life!” thoughts. So dramatic, but I honestly couldn’t help it. I am not ever like that, ever. I pride myself on trying to always be thankful for what I do have, and grateful for an overall very healthy and happy life. But last night man, it all just kind of piled on.

And then it all just got worse. Because I am a Daddy’s Girl, through and through…right down to my core. I am the definition of a Daddy’s Girl. And my whenever anything got me discouraged, or down…or upset, I would always talk to my dad about it. He was the wisest man I’ve ever met; extremely intelligent, and insightful, and thoughtful. And besides all that, he was the most supportive person in my life. Always. He and I were two peas in a pod. So, for me, going through this has been difficult all along. But last night, after all I had been through that day, and the horrible pain that I was still having in my leg even three or four hours later, all I wanted was my Daddy.

I just wanted my Daddy. And he’s not here. So there it is. A girl sometimes just needs her dad…and I can’t have him. So while driving home, all of these awful emotions just hit me all at once and I had a “woe is me” sobbing-crying-pity-party all the way home and for about another hour after that.

Then I ate a brownie.

What can I say? Sometimes a girl just needs her Dad. BUT, I picked my head up, wiped the tears, realized I was being dramatic and have since just done my best to pick my sorry self up and move on. That’s what I do. I move on and adjust the sails.

Friday I see Sophia Bush (Val) again, and we are going to do more gentle stretches, no exercises. We may try some ultrasound, depending on how I’m doing. From this point forward I will not do any strenuous anything, I can’t even LOOK at strenuous exercises. No more of the exercises Dr. Schiller gave me. I just have a couple stretches that Val gave me and I have to do those three times a day every day.

Today, I am looking forward, and not backward. I’m realizing that even when I can’t hug my dad, he’s still hugging me. He’s here, and he’s supporting me, even if I sometimes can’t see that. Today, I move forward, and not backwards. This psoas is a roadblock, but I’ll find a detour to keep the course.

Sitting Pretty.

Hello again! Updating on the painful hip issues.

A couple weeks ago I decided to call and make an appointment with Dr. S. to see what's going on with this silly little hip. It hasn't gotten better, and what's more is that it's more painful than it was. I've had a couple pretty concerning episodes with serious pain. One where I actually couldn't even stand up straight or walk at all, I had to have my husband get my crutches so I could get around for a few minutes while my hip worked itself out. The pain eventually went away, but it was scary for a few minutes.
It's doesn't seem like bone pain, though. It seems like it's psoas, or something muscular/tendon deep in there that is pulling. It's a pulling and aching feeling, and it only happens when I use the muscles. It doesn't seem to hurt when the leg is moved without my muscles (like if I move it physically with my hands). Almost every episode has happened after I've been sitting for a while. I am continuing to have a hard time with sitting. Even as I write this, I can feel everything stiffening up. Generally speaking, I can get along just fine with the sitting/stiffness issue. It's only painful to stand up straight, and for a few seconds walking when I get up, but after I move around to get things going again it's not really painful at all. It's just the "start-up" that hurts. I think I need some WD-40.

So, now I just wait until I can see Dr. S. I meet with him in another couple weeks on the 31st of March. It can't come soon enough. I want to chat about my right hip, and I also want to bring up my left hip, which is also stiff and painful when I first get up as well. The left isn't overly worrisome, but I want to bring it to his attention in case he wants to see what's up.

I know it could be any number of things. I could just be that I really need to get back to the gym and work and stretch these bad boys out. It could be that these are the kinds of things I should expect from a PAO-ed hip. It could be that there really is something going on. Who knows, we will hopefully start figuring it out over the next few weeks.

I'll let you know how my appointment with Dr. S. goes.
-D

Growing Pains

This post will be short and sweet. I just wanted to post my latest x-rays to illustrate where my concerns are about excess bone growth. I talked about these in my "Tidbits" post.

Quick reminder of current conditions:
I'm 15 months out of RPAO. I've had RPAO and a right arthroscope to fix torn labrum, to microfracture and to resurface femoral head.

Any thoughts would be much appreciated! I've heard from a few different people and it seems most likely to be something like Heterotopic Ossification (which may, or may not be an issue). Also, regarding the non-union, my surgeon isn't concerned with it at this point. It isn't bothering me on a regular basis. I will be asking him about it again, just to be sure.

I've discussed the bone growth concerns with my surgeon and as a first step he is sending me for an ultrasound to see if there is any cyst formation in the area. I did have cyst growth prior to surgery.

That is all for now, thanks for all emails, comments and well wishes so far. Please feel free to leave your thoughts in the comments below! Any and all input is welcomed.

Thanks guys,
D

Breaking Bad (Habits)

Now that I’m a year on, I find myself really focusing on the little things. I don’t walk with a limp anymore, and I don’t even hesitate to do anything at all with my hip throughout the day. Now, I mostly just focus on all the ridiculous bad habits I didn’t know I had. It’s amazing what the human body will do to “protect” itself over time. I’ve been in pain for so long, that my body developed these coping mechanisms I didn’t even know I had. You change certain things about how you move, and how you position yourself so that you don’t trigger that horrible pain. 

I don’t think I realized how many bad habits I have, until I started trying to break them. For instance, I still have a hard time walking straight upright. I still have somewhat terrible posture. Before PAO, my labral tears were so bad that I couldn’t take a full step across the top of my hip without buckling pain. If I ever even tried it, I would end up bent over cursing at myself. I also couldn’t stand up straight when I walked because the full pressure and stretching on the joint hurt immensely. So, I walked just a little bit hunched over with my shoulders slouched in, and leaning forward to alleviate the stretching in the front of the joint. I took small, half steps on my right side, limping so that I didn’t have to move across the top of the joint. Tom (my PT) used to call this guarding. I was guarding my hip from any motions that would cause pain. 

Another bad habit I learned over the years, to protect myself from my hip pain, was to walk down the stairs facing sideways. So, instead of facing straight down the stairs and putting all of my emphasis on walking down straight onto my hip, or over my hip, at some point I started walking down stairs with my body facing to the side. Usually, I face the left side. Most of the time, now, I catch myself doing this mid-flight of stairs and I think “What the heck am I doing?!” Well…when I really think about it...I was protecting my joint from full pressure and movement. 

I still physically pick up and lift my RPAO-ed leg into the car with my hands after I’ve sat in the seat, and then do the same and lift my leg out when I’m attempting to get out of the car. I don’t have to do this anymore…it’s just a bad habit. This was a habit I learned post PAO. The psoas and rectus muscles were so damaged that I couldn’t even lift my leg up with my own muscles, I had to lift it with my hands and move it into the car. Even today, over a year later, I still have a little bit of trouble doing this on my own…so I still lift my leg with my hands. 

I still sleep on my left side. Every night, always. This one is the worst. I can’t seem to break this habit. The problem is that sleeping on your left side for a million years is not good for any of the other joints…like, let’s say, your shoulder. My poor left shoulder and my left side of my neck are constantly aching because of this. Problem is, I can’t get comfortable any other way! I’ve been trying to fall asleep on my back or right side, it’s been a bit of a battle…but hopefully I’ll get used to it over time. 

These are just the ones I catch myself doing on a regular basis. Now, breaking myself of these things is what I have been focusing all of my “recovery” on. I make myself walk straight up, with good posture. I force myself to go down the stairs correctly. I am trying to remember not to lift my leg into the car, and every night I continue to try and sleep in another position. I’m finding it’s very difficult to change something your body has been doing for years and years. It’ll take some time, but I’ll get there.

Now that I’ve got other hip-y’s thinking about it, I bet you’ll start realizing that you’ve got things you do to “guard” against your pain. Whether it’s before your surgery, if you’re recovering from a PAO or other surgery, or you’re years separated from a recovery…I hope that you and I will both be able to live without guarding for pain.

Hope all are well,

Talk soon,

D xox