It’s been 14 months since I was diagnosed with ON(AVN). Since going on the three month course of Lovenox over the summer my pain has decreased and I ‘seem’ to be getting better. I say seem because it’s not a consistent increasing line to improvement. I will have a few good pain weeks and then suddenly a bad pain week for no reason. There seems to be no correlation between my activity and my pain during those weeks. The MRIs I had in August showed some revascularization to the area of dead bone in my femurs. I have more MRIs scheduled in February in hopes that it’s evident that more reossification has occurred.
When I feel defiant I push myself to do things even though it makes my pain worse. Sometimes in stead of feeling like 35 I feel like 85. I’m still unable to work and I fatigue extremely easily. When going home for the holidays I was really hoping I would be able to make it through the airport with my walker but it was too far so I had to go in a wheelchair. At times this journey to getting better seems unending.
All along I’ve kept a really positive attitude, but sometimes I lose patience and feel overcome with frustration. I’m proud that I can walk up the three flights of stairs to my apartment four times a day now and that I can walk about six blocks with just a cane. However, sometimes at the end of the day, I worry that I’m not getting better, that I’ve just gotten used to chronic pain. I have to look back several months to remember there was a point when I couldn’t walk at all.
There are moments when I’m enjoying time with my friends when I forget about my ON(AVN). Then there are other times when I just can’t believe this happened to me. I know you must all feel like that.
In many ways I have learned to live with this disease. But while all my friends are having babies, some even their second, I can see my biological clock ticking by knowing that my body right now couldn’t possibly handle carrying a baby. If it will ever be possible for me to be pregnant, I know I will be an older mother and I hadn’t planned on that. This is something that really upsets me and plagues my mind frequently.
I go to therapy and talk about my frustrations. I can’t go on and on to my friends. Often because they don’t understand and also because I’m like a broken record. I’ve been trying to find the peace within myself to have patience, but as the months progress I have days when my patience has worn thin and I feel angry. I don’t want to feel this way. I always said, and I think I even wrote on this site, that I didn’t want to be defined by my disease but before I do anything I always have to consider my ON(AVN) and how much my body can handle. My greatest battle at the moment is a mental one. I accept that this happened to me, but I don’t seem to accept the ramifications. I’m disappointed in myself for feeling this way.
Going forward I am going to put forth my best effort to embrace the new year. I hope each of you make progress and are able to come to grips with your disease from a mental point of view. Often the mental battle is almost as bad as the physical one. I wish all of you a Happy and Healthier 2013!!!!!
I’m so relieved to read your posts and know that someone “gets it.” The 31st was my last day of work. I will be applying for long-term disability that is offered through my job. The wonderful people I work for have offered to continue paying my health insurance and I will have a job to come back to. What does one do when they don’t have a job to go to? I’ve never wanted to be a ‘housewife’ and I’m afraid depression will set in. I’m trying to make lists of things to do (Pinterest helps with this).
I hope you have a wonderful 2013 and thanks for getting it!
I am 46 and am facing my 5th surgery( partial knee replacment) for medial femoral chondyle AVN casued by a meniscal tear repair performed in April 2009. I have had core decompression, microfracturing and 2 bone grafts, which have all failed due to a combination of failure to revascularize and death of both grafts ( bone up) I have been on Hydrocodone since the 2009 surgery and understand your worry of addiction. I have been very lucky with regards to this as my surgeon. He understands the pain levels can be life altering but is also honest about possible withdrawal problems and is going to work with me to accomplish my goal of no painkillers as soon as possible after the surgery.
Hang in there and listen to your body. Pain can cause all kinds of mental anguish, none of which are visible and thus so hard for others to understand.
Awhile back, when I blogged that the doctors suspected I might have AVN, you commented on my blog–I have been following yours ever since, and I thought you might like to know that I FINALLY got a diagnosis: Femoral Acetabular Impingement Syndrome, which subsequently has caused a labral tear. Thankfully, surgery (albeit a major one) will correct and permanently fix the issue. I will continue to follow your blog; I wish you the best of luck and will keep you in my prayers!
Thank you for checking back in. I’m am so happy you found out what was wrong with you and that you can do something to make it better!!! The best of luck to you. May health be the greatest gift life gives you!
I totally get it. I just wrote this post. Probably sounds familiar to you. http://www.nerdgirl.com/2013/03/the-new-normal-living-with-a-chronic-illness/