Think for a moment if you would, that you were involved in the following scenario, and please give me feedback on how you would handle it.I'm a 23 yr old girl that trusts doctors and naively believes that they all are going to do the best they can to help me, and inform me of everything I need to know. One day, I go to the doctor for a seemingly moderate but relentless upper respiratory infection. It WILL NOT go away. So I keep going back to this doctor. And every time I go, he gives me a little shot with a big dose of steroids in it. Little naive me has no idea the repercussions of that little shot every time I go in to see this doctor and this doctor fails to share them with me. So I just go along with it and go about my merry little way. Fast forward to a year and a half and 80 pounds later. I have a MINOR fall at work and start having some MAJOR pain in my left knee and hip. I go to the worker's comp (WC) doctor to figure out what the heck is going on since I figured that I must have landed on my leg "just right." X-rays show nothing. But the WC doc feels around my knee he says, "I think you just have some tendonitis, let's give you a shot of steroids.........in your kneecap." OH BOY! Please?! Well, isn't this just the cat's ass. So, he gives me the most painful injection I've ever had in my entire life...yeppers...right into the hard bone of my knee cap. Well, that didn't fix the problem. SO, over the next 3 months and 2 more awful steriod injections in my knee cap, the brilliant doc decided to do an MRI. The MRI not only covered my knee but got just a tiny bit of my femur connected to my knee and thank GOODNESS for that. I waited all day long for the radiologist to read the results and when the WC doc came back in the room, he sat down in front of me. In all the visits that I had with him, this man NEVER sat down. I knew something was wrong. He stumbled over his words and told me something that for the rest of my life I will never forget. "You have a disease of the bone called Avascular Necrosis. It's when your bones literally die because of lack of blood supply. It's extremely rare. We saw holes in your femur right above your knee and it's probably affecting your entire femur, which is why you are having knee pain. It usually affects people's hips which is probably why you are having hip pain, but we didn't do a hip x-ray. Have you had any large doses of steroids recently as far back as two years?" Hmmmm. As I contemplated punching him, I said, "Why yes, yes I have." And I told him of the doc that had given me all the steroids that had not worked and had made me gain a crapload of weight and that I had later discovered was a quack. He says, "Well, there you go." He gives me a referral to an orthopedic doc and LOTS of pain medication while telling me that this disease is second in pain only to BONE CANCER and sends me home telling me that there isn't anything more he can do for me since this obviously wasn't work related anymore. Well, then. So, I go to the first orthopedic doc who DOES do the first x-ray of my left hip which is BAD. It's already starting to show some collapse...that's right party people, in October of 2004, my hip was "starting" to collapse. Do the math. Anyway, he says that I have stage 3 AVN and that I should go home and pray about it because God heals. Well. I truly believe that God heals. I do. But I also believe that God put people on this Earth to become doctors and that they took a Hipocratic Oath to help me in my time of need. So, I took my crutches and x-rays, told that man he better not charge me for my visit (which he didn't) and went home to cry. My job "asked me to resign" because it was a job at a hospital that required a lot of walking and it was a new job. I wasn't even done with my probation period and didn't even have my insurance yet, so I had to leave. I was in so much pain every day and the only "cure" for my disease was surgery so I couldn't find a full time job. And any insurance I could get on would consider my AVN a pre-existing condition and it would be a year before they would cover it. So, I go see a few more docs who all say that the only thing that will help me is a Total Hip Replacement because my hip is too far gone to do anything else. And they prescribed every medicine known to man and only ONE doctor prescribed Lortab (Hydrocodone). All the others were crap. There is a REASON that they make narcotics, people. Yes, they are strong. Yes, they can be addictive to SOME PEOPLE. I am not one of them. But it is the ONLY medicine that helps with my pain. And let me tell you, the pain is HORRIBLE. But yet, everytime I tell a doc that that's the only med that will help me, they look at me like I'm a drug seeker. They say they won't give it to me because they won't be responsible for a young girl getting addicted to pain meds. But yet, they've seen the x-rays. They've all oohed and aahed over them. They won't give me my surgery because I'm too young for that too! They say that if they replaced my hip now, then they'd have to replace it again in probably 20 years...and then again by the time I'm 60 or 65. And then, there might not be enough bone to work with, and I'd be in a wheelchair. Well, excuse the hell out of me, but what if I get hit by a bus in 10 years?!? I'd like to have 10 years of walking and running and working and playing and making love and bending over without wanting to cry and getting down on the floor and playing with the animals, and not worrying if my crutches or a motorized wheelchair is accessible if I get tired, and shopping till I DON'T drop and dancing the night away, and walking up stairs without using the railing, and taking a shower without using a shower stool, and putting on my pants without having to sit down to do it, and get in my car with out having to physically pick up my leg and put it in the car, and cancel plans with people because it's raining outside and I know if I go out I'll be hurting in an hour, or not making plans in advance because I don't know what my pain level will be that day. So, these "doctors" are the ones telling ME that I can't do these things. Because they don't want to get sued when I'm 65. And they don't want me to have pain medication because they don't want me to sue them for being addicted to it. So, they say they want to do everything they can to help me, and instead, they've told me that not only are they going to not do the surgery, but they are not going to give me the only pain medication that will keep me out of pain. Does this make sense to anyone? And this isn't just ONE doctor. And this hasn't just happened to ME alone. But it mostly happens to young people. And young people with a disease like mine. People with cancer can say, give me morphine...they get it. Or people with a broken hip can say give me surgery and they'll get it because it's an "emergency". But the docs don't seem to think that me walking around every day in horrible pain qualifies as poor quality of life. It sucks.Now, in December of 2005, my left hip is considered totally collapsed and yet they still do nothing because I still "get around okay." But now that the cold weather has moved in, my pain is almost unbearable. But I deal with it. Every day. Every minute. Every second. Stop to think about that for just ONE second. If you've broken something. If you've burned yourself. If you've pulled a muscle or sprained an ankle. You know REAL pain. Try having that pain all the time...and there is NO getting away from it and NO ONE wants to help you and there was nothing you could do about it. Now try putting a smile on your face every single day. Now try not complaining about your pain. I do it every single damn day. EVERY DAY PEOPLE. I'm not talking about once a week I have a twinge of pain in my hip. Every day, every second, every single MOVE I MAKE. Try it...and then try to tell me everything's gonna be okay. I'm trying to get across to everyone how REAL this is. I don't have a visible disease except for a little limping. I don't have a disease with a well-known name like CANCER. I don't have a disease that will kill me. So my disease gets ignored by these doctors who don't want to get sued because they don't know enough about this disease. Even though my disease is one of the most painful ones out there. And they don't live inside my body every second feeling my pain and my muscles atrophy and my back spasms and my hip popping and my femur giving out from under me. So I have to be quiet?
So, the reason for this rant is because I woke up this morning with really bad pain. And tomorrow I am supposed to go back to see the ortho doc. I have no idea what he wants to see me about. Maybe they've all talked it over and are sick of hearing me kvetch about it and will give me the surgery or a lifetime supply of pain pills. I will keep you all informed. Feel free to comment. But whatever you do, BE YOUR OWN ADVOCATE WHEN IT COMES TO YOUR HEALTHCARE! These doctors DO NOT know everything. DO RESEARCH. Lots of orthos didn't even know what my disease WAS when I first got this because it was so rare. Just keep your eyes open!
Peace and love always!
Mare Bear
