My story brings me to writing this post. It is imperative that awareness and early diagnosis of this condition becomes noticed to avoid my current situation.
Let me begin by saying that I am a very positive, faithful, and try to be a humorous person. These are my greatest blessings. They give me immense strength.
I am almost 50 this year. I was born the 7th of 9 children in a northern US city Waukegan, IL. I grew up on a tree farm, my father was an architect and my mother was an illustrator for Hallmark. My whole life I was told how strong I was. I climbed out of my crib at 9 months, carried my newborn brother at the age of 2 and half, and became an athlete of some competitive success. I did it all playing tennis, badminton, raced bicycles, hiked, golfed, played volleyball, and ran until I couldn’t. At 12 I complained of knee pain after volleyball season. Mom brought me to a doctor he said there was nothing, so I carried on. At 13 the pediatrican noted I had bowed legs, but I wasn’t going to be a model ,right? ( and you will never wear that toupe correctly, I thought) In my early 20’s I began my career as an illustrator. I moved to NYC and had success. I grew my business. I met my husband there too. The next 20 years I sat working long hours and exercised in between. I became a pretty good golfer too, that was in the nuptials. I had my children in my early 30’s. It was after that I started to have real pain and back spasms, but I carried on with high level activity. I just though it was from over use and that was normal for a person who can’t sit still. I will remind you I was 7 of 9 kids.
So I am going to flash forward to my early 40’s. The pain was now pretty much a constant in my back, but I didn’t want to see a doctor because I might be labeled a pre-existing condition and my husband was just about to finish his residency and change jobs. ( He went back to school at 30 . It was his third career. A chemical engineer in sales, and to top it a masters in business from Northwestern, and yes I supported the family!) I took it upon myself to do some things to help. I lost weight and exercised everyday. In 2008, I couldn’t take it any longer I went for a MRI because the pain in my back was getting worse. It revealed very little. The doctor said I had weak core muscles and gave me some Meloxicam and sent me on my way.
My friend, a personal trainer, suggested she could help me. So I spent two years building my core. Sure I was getting stronger, but things that never hurt started to become problems. I had terrible pain in my feet. Once my foot became swollen and purple on a vacation from walking long distances. By the time I saw the doctor he said it had corrected and no need for any x-rays. He diagnosed me with metatarsalargia and gave me some foot pads. It was like walking on glass. I would also have occasional knee pain. By 2011 my right hip started to become a problem. I started yoga , but I couldn’t even get into simple poses. My hip was locked up. The straw that broke me was that I couldn’t walk anymore. I had terrible pain in my hip flexor and I could no longer walk. My good friend who was 13 years older had absolutely no pain and we were doing the same activity. I asked, “Do you have any pain?”, she answered “No”. “Something is really wrong with me”, I said.
In 2012 I asked for a PT consult. They sent me for 2 months treatment. The PT suspected something more than a torn muscle, but she was able to restore mobility to the hip. She urged me to seek an orthopedic consult if the pain returned. In March of 2012 it did. I had just completed redoing my basement. I trimmed out the entire room, I was building sets for my daughter’s theater group, and in the middle of a doing a children’s book. I had pain right in the joint. Yikes I am wearing myself out just writing this!
Finally in March of 2012 I had a correct diagnosis with a simple x-ray. “You have bi lateral dysplasia” the doctor told me. “What?” I responded. I was quite calm. I took it all in. He explained that eventually I would have the hip replaced. “Would this fix my back pain too?”, I asked. “Maybe and I hope”, he said. In the meantime he gave me a kenalog shot with cortisone and ordered an MRI. He called me back in May of 2012. “Well he said, your hip is gone.Bone on bone with arthritis.” They found cysts, tears in the labrum, subluxation of joint, and a tendon tear. “Now I did it!”, I thought to myself. He couldn’t believe I had gone this long with no diagnosis or pain. “You never were in a harness?, he asked. “Only to keep me from running away. True.” I replied. How about pain?, “Yes my whole life.” He told me all my hyper activity probably gave me many extra years. The labrum was three times normal thickness on both sides. “A monster”, he said. He said he would have me come back in August at the end of the summer and I could think about what I wanted to do for the next phase of treatment, which was a THA or cleaning out and repair, but THA was inevitable. The other hip would be probably in 5 years. Okay I’ll see you then. I walked out called my husband and started to cry, but I got it together.
My mother was very I’ll and I didn’t want to have it done. I was walking around bone on bone and just using Aleve for pain control. It didn’t keep me down I played golf all summer. I also kayaked on Lake Michigan, surfing the waves. I came to visit my mother often. No doctor really ever thought I was in pain or that bad, because I just kept moving forward.
I walked into that doctor’s office on Aug. 17th. That day I had a hole-in-one and two birdies on the other par 3s. I beat the club champ. I shot a 32 on the front nine of the golf course. A course record, and all with crappy hips and crappy back. I signed the waiver and on October 15th I would have a THA reconstruction and tendon repair. I told my doc of my golfing achievement. The doctor said, “Now you are making me feel bad.” He never really told me what was going to be realty. Maybe for the best. Four days later on August 21st my mother passed away. She told me she was afraid I’d be in a lot of pain. In September I completed my last work obligation. A video scribe for Abbott Labs.
On Oct 15th my life changed dramatically. I didn’t know what was to come. Man that replacement hurt! They loaded me with oxycodone and muscle relaxers. I had spasms that felt like a knife was being jabbed into my hip. I went to my daughter’s play 4 days after replacement too. Sitting in a wheelchair grinding my teeth. Sarah got the lead as a freshman. It was really unexpected and I wasn’t going to let this keep me down. Two weeks passed and things got better. They put me into PT right away. I spent the next three months in PT. They supported me physically and mentally. It was really rough and I was trying to raise two teens. Thank God I was an athletic person. I had a lot of other muscles to keep me going. I also had a strong mind and good sense of humor!
Now I am almost three months post op and my back is crazy in pain. I kept telling my PT and she would send notes to the doctor. But nobody seemed to be that concerned. He gave me another shot in my other hip, because pain was increasing on that side. It helped a bit. Shortly before Christmas I got up and my legs buckled I couldn’t walk. The pain in my back was excrutiating. I wheeled myself into the PT and I was crying. I NEVER cry.:)
The doctor ordered a pain management consult asap. They ordered an MRI and an epidural. Luckily there was a cancellation and I got in. “ I don’t think you’ll need surgery” the pain management doc said.
Three epidurals later I had some relief ,but when those babies wore out, ouch! Back to square one. It’s now April 2013 and I cannot function, I can’t get the muscles to work to get my new hip rehabbed. They ordered an EMT test to make sure. Yes indeed I have significant back problems. I have stenosis and degenerative disc disease. Yahoo! Tell me more. “If it walks like duck, talks, like a duck, it is a duck”, the hip surgeon said. “Quack, quack, get me to the spine doctor please!”, I said. The spine surgeon became the team quarterback at my request. A great surgeon Dr. Stoll gave me a decompression and foraminectomy on May 14th.
I am now 8 months out from back surgery. I had an MRI of the other hip and it is stable, but plagued by tendonitis. My SI joint continues to have pain. They marked it moderate in the MRI report ,but you are kidding me right? Somedays it’s terribe pain. Lordy Lord! I see a wonderful PT a couple times a month. Today I exercise everyday strengthening and maintaining my core. I mix up my daily exercise routine with aqua walking, swimming, stationary biking. I have to be very cautious as too much causes tendonitis to flair. I am off all pain relievers. I take Celebrex 2x a day and Gabapentin. I rest a lot too and ice. The exercise keeps my mind sharp and my overall mental health stable.
I continue to be very positive and focused on healing. I know someday I will be functioning. I will never be the athlete I was, but I still have my blessings. My dear husband is a great guy. He is very patient. We have been married 24 years and I will tell you that the last two years have made our marriage rock solid. I told him today that I will require more maintenance this year as my crappy hip is limiting and he is to smile and just do what I ask. It’s a perfect marriage. ☺
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