Sunday, January 12, 2014

I like athletes & bodybuilders for a weird reason..

I'm not a sports fan.. at all. I get so bored watching football that it gives me the sensation of needing to pass copious amounts of gas. I like the beer drinking.. watching fans dress themselves in uniform and act like they're going to war under the team has always been interesting to me.. but the game itself? I have to get seriously drunk in order to enjoy myself at all during these events. I can't even enjoy the butt spankings they give each other on the field.. they're too covered up. At least rugby shows some leg. But that's not really what I'm writing about. I love athletes. I love body builders. I love the people who get so obsessed over their active lifestyles and body conditions that it takes over their lives. Why? Because I have these people to thank for relieving my chronic pain just a little bit more every day. In the most obscure way, their obsessions have given me a better quality of life. And I appreciate that more than anyone will probably ever understand.

I have congenital hip dysplasia, 3 herniated spinal discs, osteoarthritis, a broken tailbone, a curved spine, and the sides of my body don't match each other in height. As a matter of fact, the measurements drastically change every ten years. And as a result, I have severe chronic pain. I've had pain since childhood. My tolerance is through the roof, but it still kicks my ass into submission. My quality of life was dwindling when I couldn't figure out how to treat my pain problems. But thanks to athletes and those obsessed with their muscles, that has changed. I hope that anyone else suffering from congenital hip dysplasia might read this and get some ideas as well. I swear.. it really helps to take the edge off that gnarly pain.

First off, let me explain how pain control doctors and orthopedic surgeons seem to work in the Western hemisphere. While they have extensive degrees and years of hospital experience, they don't seem to understand how to encompass the whole of how all the systems in the body work together.. or maybe they just forget. It's as though their concentrations in one area of study has inhibited their ability to properly diagnose. And this isn't an easy condition to fix.. frankly, no one has a concrete answer. It's just too complex. Congenital means "born with". Dysplasia is a broad term describing any kind of displacement of the bones anywhere from mild to severe. All hip dysplasia patients are not born equal. We're similar, but we're as different as fingerprints. Lumping us together under one category just doesn't work for treating the condition. I don't blame my surgeons for not knowing what to do.. it just makes me sad that most of them can't seem to think outside the box. That goes for sports medicine doctors, pain control doctors and therapists I've had over the years, too. My pain is ridiculously complicated. It is a mixture of muscle displacement, absence of bones, prosthetics rigged to a pelvis that didn't even form completely, and nerve damage. Oh.. and about nine surgeries and the damage caused from them. Tell me who on earth is going to figure out how to calm my pain down? It's like expecting your boyfriend to go pull the moon out of the sky and give it to you.

So, I recently had a light bulb go on in my head. It came when I was researching the fastest way to rid myself of sciatic nerve pain.. something that's really common and hurts like hell. After reading and watching videos of doctors explaining sciatica, I realized this pain was tied to my psoas muscle. So I began to concentrate on muscles, and started watching athletes on youtube explain how to "release the psoas" after strenuous activity, saving their lower backs and possibly their careers.

In my experience with people & relationships, body builders and athletes know more about the muscles in the body than most doctors do. They know how everything connects, what to do to push themselves, and how to not get hurt doing it. My epiphany happened when I saw how the psoas connected to the iliacus muscle. The psoas runs from the lumbar spine (last 5 discs) down to the hipbone and connects to the iliacus, which runs up along the inner side of the edge of the pelvis. I was born without much of a pelvis.. I don't have the outer edge at all. I also don't have any hip ball or socket. It was all just floating around in there all weird and stuff. That means those muscles don't attach where they're supposed to. And since I had a bunch of surgeries that cut away and rearranged what bones I did have, there's no telling what those very important muscles eventually attached themselves to. On top of that, I now have titanium in there.. and the prosthetics don't attach where they're supposed to, either. I never had a complete pelvis to work with in the first place. By the time I got hip replacements, it was a total mess in there. Everything is now held together awkwardly with screws and pins, and things are placed wherever the doctors can find a spot. Now my question is this: why didn't any of these doctors or therapists ever point me in this direction? Why were their answers always a point blank "I'm sorry.. I just don't understand what else to do here.." (And I swear to you, I'm not making that up.) My theory is that concentrating on one area keeps you from paying much attention to the surrounding connections and secondary problems that arise from the body systems not working together properly. But I'm just a laymen, right?

In any regard, this is what I learned from reeling in sciatic pain this week: Your psoas muscle goes from the lumbar to the hip bone. Your sciatic nerve goes through a tiny hole in the pelvis and then weaves in and out of that psoas muscle. People who are very active tend to use that muscle to a point where it tightens up so much that it squeezes and pinches the sciatic nerve. It then inflames and swells through the tiny pin-like hole in the pelvis, causing even more intense pain. So you have pain coursing from your lower back through your hip and down your leg. And the only way to alleviate the damage done to the nerve is to get that muscle to relax. If you don't want to wait for it to do that on its own, you can do what they call "releasing the psoas." You can find out how to do this by looking through youtube.. it's there. They're just very comfortable stretches that don't stress the psoas any more than it's already been stressed. And the pain will begin to go away. (You can also take 4 ibuprofen every four to six hours to reduce swelling just to get the pain under control so that you can move at all.) After all this, you can slowly start to do sciatic nerve exercises to get the fluid flowing in that area, which heals it up quicker.

Understanding all this made me realize why I've always felt like I was lifting weights with my legs every time I take a step while walking. It is because my psoas and iliacus muscles aren't connected in the right spots, and it's a gigantic strain on them just to do simple every day things like walking down the street or stepping across a water puddle, or even lifting my legs onto an ottoman. I can't lift my legs easily at all. It always feels like I'm balancing a bowling ball on them. I stress the crap out of those misplaced muscles every day, all day long. No wonder I'm reeling in pain and tired as hell by the time I go to bed every night! If you have congenital hip dysplasia, please pay close attention to and figure out how your own muscles and limited bone structures are placed, and how they're working together. Figure out how your body's been trying to compensate for what it cannot normally do, and you will figure out how to treat your pain better. We can't rely on doctors or therapists just because they hold expensive degrees and pseudo important name tags. They're just as baffled as we are over this, and this condition is an ongoing learning experience. You have to dedicate your own time to learning how to treat yourself. No one is like you.. you're very different. All of us have different degrees of malformation and pain. So find your own way and stop being so frustrated and dependent on someone who knows even less about your pain than you do.

Also, give this a thought.. you're going to have at least three different types of pain to deal with. There's nerve damage pain (from surgeries and realignment of the skeleton every time you undergo a procedure), muscle displacement pain and damage, and osteotomy pain. (cutting into and rearranging bone at less than two years old) You have to deal with all three of these and figure out your limits. And there may be other complications that cause even more pain due to misunderstanding your condition over the years. Example: my curved spine and herniated discs were caused from a lack of understanding what was going on in surgery as a child, and I never understood I wasn't supposed to do strenuous physical labor when I finally left home and started looking for jobs. I worked very hard for over 20 years and caused more damage to my spine, hips, and joints.  I listened to other people when getting reprimanded for calling in sick on days I couldn't get out of bed.  I caused a lot of my own problems by not understanding my limits and not taking my disability as seriously as I should have. I allowed people who didn't know anything about me decide my lack of ability was just laziness.

Don't ever feel pressured to do something you have a feeling will hurt you, no matter how much others may expect you to do it. This is an invisible disability on the outside. Nobody can see your bones, or the way your muscles are twisted and pulled out of place. They can't see the metal or the fractures, and they have no idea how easy it is for that rigged together surgical job to slip out of place again. All other people can see is a normal human being who's not doing as much as they are. And that will always cause confusion and angst. You know where your pain is coming from, what it feels like, and your body will tell you when to stop doing something. You can always tell. Never feel guilty for not doing as much as people uneducated about this might expect you to do. Listen to yourself and trust what your body tells you. Abnormal fatigue and physical stress to the point of jacking up the pain is pushing it too far.. not "keeping up".  You're not a failure because you can't sit in a chair for more than four hours. You're not lazy because you can't work the same way most people can. You have a serious condition. And every physical therapist isn't the same; there are some real idiots out there. I'm not knocking all of them… there are good ones, too. I'm just trying to get hip dysplasia patients to question things and give themselves more credit. It seems as though we depend too much on doctors because they're doctors, and we let people who don't understand our condition make us feel guilty for long absences in the work place. Putting so much faith in other people who do not live in this much pain every day isn't going to make it go away or make us more "able". This has always been a complicated condition that no one has any real answers for. Surgeries for it are trial and error, with experience and years of study in one area being what most orthopedic surgeons bank on. But again, concentrating in one area keeps a doctor one-track minded, and they do seem to dismiss other issues that may be key in treating your pain. And listening to the general public when they are pressuring you to be more active is physically damaging in the long run. Trust me, my pain is worse than it should be because I pushed my limits. I regret it now. At one point, I remember my legs completely giving out at work and falling to the floor, unable to move. It was in the middle of a hotel lobby, and the ambulance took me out on a stretcher. I was 24 years old, and only employed 20 hours per week. According to what most people believe when they look at me, I should have been able to handle this.

I have spent decades trying to understand this thing and treat the pain. If it's still this complicated for me, imagine how confused people who don't suffer with it are. So you can be polite, but don't take it seriously the next time you are judged. And you will be. Try not to get angry when another doctor tells you he doesn't think he can do anything else for you. Congenital hip dysplasia can't always be corrected or even treated easily. Just do some research, learn about your body, and go from there.