I have a bone disease called Avascular Necrosis or AVN. Because of a serious upper respiratory infection in 2003, I was hospitalized for a week and given MASSIVE doses of IV steroids in a very short period of time. A year later, I tripped and fell on the sidewalk at work. I noticed after this “nothing” fall that I had some pretty bad pain in my left leg. Doctors did all sorts of tests and for MONTHS, they found nothing. But the pain just got worse and worse. I think the docs thought I was faking a lot of it. Well, finally, one exasperated doc did an MRI of my left knee. The MRI caught a glimpse of a small part of my femur…thank goodness. The doc saw bone infarcts, “holes”, in my femur. Luckily, the doc that I was seeing had actually heard of AVN. He immediately scheduled me to see an orthopedic doc, and ordered an MRI of my left hip. In October of 2004, I was diagnosed with Avascular Necrosis of the left hip and femur. When they finally got around to discovering this, the ONLY option for me was to get a hip replacement. Problem was…I was only 24 years old. Not many docs are willing to do a hip replacement on a 24 year old. So, for 3 years I went to several different doctors trying to find someone who would give me the hip replacement and help me with my pain and none of them would help me. That was a time in my life when I felt extremely helpless and alone. It was horrible, and I pray that no one I know will EVER have to experience that! I want to urge EVERYONE that if you are diagnosed with any disease or disorder…BE YOUR OWN ADVOCATE!! Educate yourselves!!
Now, I’ve found an AWESOME ortho doc, and he did my left hip replacement in October of 2007. Since first diagnosed with AVN, the docs have also found it in my right hip, both knees, both femurs and now we’re thinking it’s probably in both shoulders. So…eventually…I will have fake hips, fake knees and fake shoulders. We always joke that eventually, I really WILL be the “bionic woman”! LOL! I pray every day that it doesn’t spread anywhere else…like my jaw.
Okay, so back to my hip replacement in 2007. By the time they took my hip out, it had started to fracture…leaving pieces of bone “floating” around in my body. Now, that’s exactly what is happening to my right hip. It is fracturing…and it’s got to come out.
In a nutshell, AVN means that the blood supply is cut off to my joints. My bones are literally dying. It’s incredibly painful. There is NO getting away from the pain. I could lay in bed all day every day and my bones would STILL die…and I would STILL be in a lot of pain. I found a support group 5 years ago when I was first diagnosed. Thank goodness I did. At the time, there wasn’t a lot of information about this disease. It’s pretty rare for someone my age to get AVN…especially in so many places.
**I want to be sure that I am VERY clear that getting steroids for certain sicknesses, asthma, or anything else WILL NOT lead to AVN for MOST people. So, please do not go running to your doc freaking out about this disease if you or someone you know has received steroids. It just so happened that for some reason, my genes were predisposed to this disease…and I got it. YOU will probably never hear about it again except from me.**
Yes, this disease sucks. It rules my life. I’m in pain every second of every day. HOWEVER, being given this lot in life has taught me SO much!! It’s taught me that you can’t take things for granted…like exercise…or even just walking in the park on a beautiful day. You never know when those things will be taken away from you. It’s taught me patience. It’s taught me that I can CHOOSE how I react to certain situations. I made a promise to myself 5 years ago. I promised myself that NO MATTER WHAT…I would get out of bed every single day. I would not succumb to the depression and anger that was dangling like a carrot in front of my face. And guess what…I’ve gotten out of bed…EVERY. SINGLE. DAY! Sure, I have days when I cry and say, “Why me??” and I have days when I just want someone to hit me over the head with a baseball bat. I TRY to not complain about my pain very much. It’s difficult to not complain, though, when you’re hurting all the time. I honestly don’t remember what it’s like to NOT be in pain. But I know that no one wants to hear about someone hurting all the time. So, I try my BEST to keep a smile plastered on as much as possible. For those of you who have ever had to deal with constant chronic pain, you know that it is just plain exhausting. It takes a lot of energy just to get through an hour, let alone a day.
It’s tough because AVN is not a “visible” disease. You can look at me, and I look like a perfectly healthy person. So, sometimes, people don’t understand why I can’t work. Or why I can’t just go out to a movie or dinner at the last minute if I’m having a “bad” day. Once I have all my surgeries, I hope and pray that I won’t be in as much pain. But this is a chronic, lifetime disease. When I was first diagnosed, I thought, “Well, as soon as I get my hip replaced, everything will be fine!” Unfortunately, that’s not the case. It was a bit of a rude awakening for me, and it took me a long time to come to terms with the fact that I will deal with this disease every single day for the rest of my life. But…I have a choice. I either deal with it…or I don’t. And I choose to deal with it the best way that I can.
I am blessed to now have an extremely awesome surgeon who also happens to be an awesome, Christian man. I am blessed to have amazing friends who give me encouragement and support me when I need it the most. I am blessed to have a family that rallies around me and helps me when I feel like I can’t go on. I am blessed to have been with an amazing man for almost a decade, who has stood by me through all this stuff, and supports me emotionally, physically, financially, spiritually, and would do anything to take my pain away. I am IMMENSLEY blessed. And I thank God every day that I have this disease. (Yes, you read that right.) I thank Him because I KNOW what my blessings are. I KNOW that I am deeply loved and greatly supported. And I may not have known or recognized that if it weren’t for AVN.
So, there you have it. If you have ANY questions whatsoever about AVN, or what I’m going through…I’d be HAPPY to answer anything…and I do mean ANYTHING that you throw at me. Believe me…I’ve been asked some crazy and SUPER personal questions over the years. Ha! But, I’ve been more than happy to tell anyone who has asked what they want to know. If I can help one person…if I can open just one person’s eyes to what is going on with people who deal with chronic pain…then it’s all worth it.
Thanks for reading this! I hope it explains everything okay. Again, please don’t hesitate to ask me anything. Love to all as always!
~MB~
Now, I’ve found an AWESOME ortho doc, and he did my left hip replacement in October of 2007. Since first diagnosed with AVN, the docs have also found it in my right hip, both knees, both femurs and now we’re thinking it’s probably in both shoulders. So…eventually…I will have fake hips, fake knees and fake shoulders. We always joke that eventually, I really WILL be the “bionic woman”! LOL! I pray every day that it doesn’t spread anywhere else…like my jaw.
Okay, so back to my hip replacement in 2007. By the time they took my hip out, it had started to fracture…leaving pieces of bone “floating” around in my body. Now, that’s exactly what is happening to my right hip. It is fracturing…and it’s got to come out.
In a nutshell, AVN means that the blood supply is cut off to my joints. My bones are literally dying. It’s incredibly painful. There is NO getting away from the pain. I could lay in bed all day every day and my bones would STILL die…and I would STILL be in a lot of pain. I found a support group 5 years ago when I was first diagnosed. Thank goodness I did. At the time, there wasn’t a lot of information about this disease. It’s pretty rare for someone my age to get AVN…especially in so many places.
**I want to be sure that I am VERY clear that getting steroids for certain sicknesses, asthma, or anything else WILL NOT lead to AVN for MOST people. So, please do not go running to your doc freaking out about this disease if you or someone you know has received steroids. It just so happened that for some reason, my genes were predisposed to this disease…and I got it. YOU will probably never hear about it again except from me.**
Yes, this disease sucks. It rules my life. I’m in pain every second of every day. HOWEVER, being given this lot in life has taught me SO much!! It’s taught me that you can’t take things for granted…like exercise…or even just walking in the park on a beautiful day. You never know when those things will be taken away from you. It’s taught me patience. It’s taught me that I can CHOOSE how I react to certain situations. I made a promise to myself 5 years ago. I promised myself that NO MATTER WHAT…I would get out of bed every single day. I would not succumb to the depression and anger that was dangling like a carrot in front of my face. And guess what…I’ve gotten out of bed…EVERY. SINGLE. DAY! Sure, I have days when I cry and say, “Why me??” and I have days when I just want someone to hit me over the head with a baseball bat. I TRY to not complain about my pain very much. It’s difficult to not complain, though, when you’re hurting all the time. I honestly don’t remember what it’s like to NOT be in pain. But I know that no one wants to hear about someone hurting all the time. So, I try my BEST to keep a smile plastered on as much as possible. For those of you who have ever had to deal with constant chronic pain, you know that it is just plain exhausting. It takes a lot of energy just to get through an hour, let alone a day.
It’s tough because AVN is not a “visible” disease. You can look at me, and I look like a perfectly healthy person. So, sometimes, people don’t understand why I can’t work. Or why I can’t just go out to a movie or dinner at the last minute if I’m having a “bad” day. Once I have all my surgeries, I hope and pray that I won’t be in as much pain. But this is a chronic, lifetime disease. When I was first diagnosed, I thought, “Well, as soon as I get my hip replaced, everything will be fine!” Unfortunately, that’s not the case. It was a bit of a rude awakening for me, and it took me a long time to come to terms with the fact that I will deal with this disease every single day for the rest of my life. But…I have a choice. I either deal with it…or I don’t. And I choose to deal with it the best way that I can.
I am blessed to now have an extremely awesome surgeon who also happens to be an awesome, Christian man. I am blessed to have amazing friends who give me encouragement and support me when I need it the most. I am blessed to have a family that rallies around me and helps me when I feel like I can’t go on. I am blessed to have been with an amazing man for almost a decade, who has stood by me through all this stuff, and supports me emotionally, physically, financially, spiritually, and would do anything to take my pain away. I am IMMENSLEY blessed. And I thank God every day that I have this disease. (Yes, you read that right.) I thank Him because I KNOW what my blessings are. I KNOW that I am deeply loved and greatly supported. And I may not have known or recognized that if it weren’t for AVN.
So, there you have it. If you have ANY questions whatsoever about AVN, or what I’m going through…I’d be HAPPY to answer anything…and I do mean ANYTHING that you throw at me. Believe me…I’ve been asked some crazy and SUPER personal questions over the years. Ha! But, I’ve been more than happy to tell anyone who has asked what they want to know. If I can help one person…if I can open just one person’s eyes to what is going on with people who deal with chronic pain…then it’s all worth it.
Thanks for reading this! I hope it explains everything okay. Again, please don’t hesitate to ask me anything. Love to all as always!
~MB~