Who whould have thought it would be me? Struck a painful blow by an orphan disease that has literally stolen a year from my life. I know my life will never be the same. And now in the news I hear that Floyd Landis has the same disease. We’ve all heard tidbits of his story. This is mine.
Ok, so first lets begin by saying that I’ve had both hips replaced this year. The right in March and the left just this past June. I’ve been off work for nearly six months this year alone. I had to go back for four weeks in May just to re-boot my benefits.
For years, whenever I’d have an asthmatic response, my doctor’s response was “Which hip do you want the shot in?” followed by a round of oral steroids. Then last year when I began complaining of stiffness and pain in my hip joints, the first thought was that it was arthritis, and again the course of treatment was a couple of shots of steroids in the hips and another prednisone dosepak. The last straw was in August of 2005. The shots helped for about two weeks, before throwing me into an acute RA (Rheumatoid Arthritis) flare. Then my GP(General Practicioner) had the bright idea of finally sending me to a Rheumatologist, who finally gave me an actual diagnosis of RA. Three months of oral chemo to reduce the inflamation, and a referral to an Orthopedic surgeon led to my diagnosis in December of 2005. ON/AVN(Osteonecrosis/AvascularNecrosis) in both hips.
Essentially the bones of my hips were dead matter. Moot point here fellow babies, I was stage 4, which meant there’s no other option. Both hips had to be replaced. So now I’m walking on about $50000.00 worth of titanium. I don’t feel like the bionic man or anything, god I wish I looked like Lee Majors, but life sucks. Getting around was hard. I had to use a cane most of the time, which people looked at rather funny. “Why is a guy like that using a cane?” I had one gal in WalMart tell her daughter that “a lot of people do things for the effect.” I didn’t have time to explain that I’ve got something that affects 20,000 new people a year and I hope her daughter never knows the pain of this disease.
According to my Orhto, the right femur was 100%dead, the left was 85% gone, with significant erosion of both femur heads and due to the RA, I had no cushioning left in either hip. It took the words of my Ortho, to make a difference in my Mother’s mind. He told me he didn’t know how I was even walking, let alone working. Before all I got was “How do you think I feel?”, when I’d complain about the pain or call in to work. Before, she was very fond of calling me bright and early, asking “what’s wrong with you today?” She’s seventy-four, and also has RA. At one point I was actually taking 180mg of Oxycontin twice a day. Since the replacements, I still have pain, but it’s manageable.
I’m 43 years old, and a maintenance technician in a local factory where we make automotive equipment, and where some people even doubted the need for me to use a cane. I’m a big, tough guy, ok. I work with tools and heavy equipment. I used to weigh over 255, and since the diagnosis, I’ve intentionally lost over 45 pounds to take some of the pressure off the hip joints. I also used to be almost 6’2″ but now I’m about 6′ even. Amazing what AVN can do to a person.
I work very closely with my best friend. When I wasn’t at work, she had to cover for me. But when I went back, I heard all about it. She just doesn’t get it, it’s never been about how bad I feel, it’s always about how hard it is on her when I’m not there. How do you respond to this? If I couldn’t make it to the car without either falling or bursting into tears, I most likely was not going to be very functional at work even pumped full of pain meds, besides wasn’t the FMLA designed for this kind of thing? Osteonecrosis is second only to bone cancer with regard to the level of pain. But if I had cancer would I have been treated better?
Like I said, some people at work seemed to think I was faking it. I made copies of a flyer, which described the symptoms of ON/AVN and distributed a few at work, in the hopes that someone there might better understand what ON/AVN, really is, and/or recognize it if they or someone they love should happen to get it. I didn’t know how to do anymore than that. I was tired of trying to explain myself, and the pain. I know I can’t go back to doing the same job. I lack the flexibility I once had. Having titanium joints can do that to a person. I’m scheduled to return to work the middle of September. I’m not sure I can go back. Not sure I even want to. I also happen to be openly gay, which has led to a flurry of whispers. No I don’t have AIDS. I’m not HIV+, and none of this is in any way related to my condition.
I thought I’d already fought and won that particular battle, gaining acceptance and respect among my co-workers, while stomping all the sterotypes of what a gay man is supposed to be like to utter oblivion. But now, with my limitations, and their ignorance, I’ve gotten sideways looks and snide remarks. Never trust that a dragon is dead. I’ve even been subjected to outright hate speech by another maintenance man. I just wish they could feel a minute’s worth of the pain when it’s was at its worst. Is that a bad thing to wish on anyone? Probably.
I’ve spent nearly fourteen years employed there, and a number of those have been spent working with wire processing machinery. Those barrels of wire weigh up to four-hundred pounds and I’ve wrestled them around manually for years before they finally got a few, minor ergonomic aids. Too little, too late, really. I’ve got my last appointment today with my Ortho. I want to discuss with him the intermitent pain I still have which is located in the center of my left femur. There’s also times when my hips are so stiff, it’s crazy. I’m also afraid that this disease could raise it’s ugly head in other joints. Like I said before, never trust that a dragon is dead. There is no cure for ON/AVN. There are 250,000 documented cases of it at present; but the actual figure is probably much higher according to the National Osteonecrosis Foundation.
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