Embracing the Now

worry-quoteIt’s been several weeks since I last posted. It wasn’t that I had forgotten about my site, I just wanted to take a moment to step back and live in the now. I have spent all my life either dwelling on the past or worrying about the future. One of the valuable lessons I have learned due to having osteonecrosis is to live in the moment and embrace the good that I am experiencing now.

Mid February I had new MRIs performed. When my doctor went over the results with me he could still see evidence that my disease had not progressed. It has never reached my knee joints and there were patches on the MRI where bone has started to heal itself. At first I was very excited about the news. My husband and I celebrated that night by going to one of our favorite restaurants in our neighborhood. However, the next day I woke up with doubt in my mind, I spent all day driving myself crazy wondering if he misread the MRIs.

I was thinking why should I be so lucky. Can this really be true. At the moment I can only walk about 8 blocks with my cane and can stand for about 20 minutes without having pain and fatigue. I still take tramadol three times a day. I forget that a year ago at this time I couldn’t walk at all and standing was impossible. However, his prognosis seemed too good to be true. I ruined the moment for myself. I ruined the joy I had received from the good news. I talked to my therapist about my excessive worrying and she asked me if worrying had ever changed the outcome of anything and I said no. That’s when I decided I was going to step back for a few weeks from my site. It was good for me to take time off. I’ve been focusing on my physical therapy and the fact that I have been able to walk more and more. I’ve been enjoying my husband and our life together.

I was listening to a very sad story on the radio the other day. I started weeping and then hysterically crying, It was like a dam burst in side of me. A woman had a son born with a very rare genetic disease. From the age of 6 months her son went backwards in development and in the end died in February of this year at the age of four after having lived in hospice care for most of his life. She said people would often say to her,”I would die if I were you”, “I could never deal with having a child with a terminal illness”. The response in her mind was: no you wouldn’t die and secondly you would have to deal with it. There isn’t another option. She said people talked to her with pity and she knew deep down that she was just a reminder to them of how fragile life is. That everything can change in a moment. The moment a doctor gives you a diagnosis. The moment you look it up on-line and realize what the ramifications are. No one is invincible, no one. This woman’s story touched me not only because of the loss of her child but because of her strength.

I don’t know what the future holds, none of us do, but this is my reality at the moment and I’m going to try to embrace the life I am living now. No I’m not the same person I used to be. I have days when I feel extremely depressed and don’t think I can take this anymore, but if I really think about it, I still have so many good things in my life. You and I know how fragile life is, we have a perspective so many others will never have. We know how precious the now is.

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Managing and Living with Chronic Pain

Managing the pain associated with Osteonecrosis (Avascular Necrosis) is just as important as managing the disease. Remember, you know better than anyone else what level of pain you can deal with while trying to live a fully functioning life.

I’ve been on pain killers for about 16 months now. For the first few months I was on Oxycontin 7.5mg three times a day. Then I started taking Tramadol during the day and instead only took Oxycontin at night.

One of the problems with being on drugs like Oxycontin or Tramadol is that several doctors scared me and implied I could become addicted to pain killers. I know that taking pain killers is a risk. I am so overly self-aware about the possible physical and mental dependency risks that they are on my mind every time I take a pill. I know why doctors try to frighten their patients. Many people do abuse Oxycontin. However, it is very easy for a doctor to judge you when they haven’t lived with a disease like ON(AVN) that causes chronic pain.

During the holiday season, about a month ago, I decided to do two stupid things. First of all I abruptly stopped taking pain killers at night. Secondly, I decided to spend a day with my husband doing what an average 35-year-old would be doing. I went downtown on public transport with just my cane. I walked around, looked at the lights, went shopping at several stores, and spent a lot of time standing. By the time my husband and I went to dinner I was in so much pain I had to rest my legs on his lap. After dinner I could barely walk out of the restaurant and we had to get a cab back home. At home I couldn’t walk to the bathroom to brush my teeth. By the next morning I woke up in so much pain I spent the day on the couch without being able to leave the apartment.

In retrospect I was probably punishing my body, punishing it for not allowing me to lead a ‘normal’ life. I was also listening to all those voices in my head that kept saying, “you’ve been on pain killers for 16 months isn’t is time you got off of them and accept the pain!”. I kept replaying conversations I had with doctors who scared me into thinking I was going to become a drug addict.

The problem is that the level of pain associated with my osteonecrosis isn’t an acceptable level of pain. It isn’t a level of pain that allows me to do any of the things I need to do to work towards getting better such as swimming, physical therapy or walking up the three flights of stairs to my apartment. Choosing to stop taking pain killers at night and pushing myself were very foolish actions. It took me over a week before I could get my pain under control again.

I would love nothing more than to wake up and live a full day without the aid of something to help me function. However, along with pain comes depression. Depression takes you to a place it’s hard to dig yourself out of. My mind becomes dark and I can’t get away from a cyclical obsessive pattern of thinking that I will never be able to live a full happy life again. Sometimes it makes me feel like I don’t want to live my life anymore. With ON(AVN) you are already grieving the loss of so many things, compounded with the pain, sometimes you feel like you are drowining in your disease. Osteonecrosis changes your life.

I went back to my primary care physician, we had a conversation about my pain and I decided to take Tramadol at night and to only take Oxycontin for break through pain. I was happy with this decision. I still have good pain days and bad pain days. Some days I deal with my grief better than other days, but one of the most important things I have noticed is how imperative it is to have good pain management.

Chronic Pain

Embracing 2013!!

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.

Inspirational_quotesGoing 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!!!!!

Why I Am Thankful At Thanksgiving

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I spend a lot of time fighting the voice in my head that says you should be angry about what’s happened to your body and sometimes I can’t help but be envious of others who seemingly have their health and … Continue reading

Existing in a World that Feels Like it’s Not Designed for You

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I don’t usually write personal posts because I try to focus on making my site a place where ON/AVN sufferers can find information  There is so much more I have to add to my site and I feel like I haven’t achieved as … Continue reading