A new year!

Happy New Year everyone!

Ouch! It has been an achy start to the New Year for me. No, not because of avascular necrosis (AVN), but because I went sledding yesterday. Doug and I are up in Wyoming visiting his brother and family for the New Year holiday. Even though there is not much snow, we took our sleds out to the local hill and tried to make the best of it. On my second trip down the hill, I spun out of control and hit a rock with my shoulder and twisted my back. Fortunately it wasn’t my bad shoulder. After taking a little break, we all found a better hill and spent the afternoon building jumps and zooming down the slope. I am sure I could have found a more gentle activity, but I hadn’t been sledding in years and it was so fun. And the doctor did say I shouldn’t sit on the couch waiting for things to get worse, right? I hardly thought about AVN all day and that was a blessing.

In between fun activities up in Wyoming, I had some time to look back and reflect on 2012. Other than the bad news at the end of the year, 2012 was simply amazing. It was the first year I really got into the swing of things with my ostomy. Having one now feel so routine that I barely even think about it most of the time. I also thought about the goals I had set for this past year. I was successful in reaching some of them and was unable to attain others. Here is a summary of those goals:

  • I want to do a better job of keeping in touch with my friends and family.
    I worked hard on this one, but there is always room for improvement. Having a more introverted personality, I am not much of a phone-talker. In keeping with my love of writing, I usually prefer to email and write long letters to those closest to me, but when I do call my family and friends, I always feel so uplifted. I need to add more phone calls into 2013.
  • I want to continue sharing my thoughts on this site.
    When I started this blog in the spring of 2011, I had no idea how large a part of my life it would become. The comments and emails I get from everyone mean so much to me. You are all so inspirational! I also could not foresee how important this blog is to my own emotional health. Writing here helps me process the events in my journey with IBD, my ostomy and now AVN.
  • I want to get back into working on art.
    This is an area where I fell short. I LOVE doing art,  yet there was seldom time this year to squeeze it in between work, my outdoor and fitness endeavors and blogging. On the bright side, I did write and sketch in my nature journal quite a bit this year. Seeing that this is my favorite activity of all my art-related pastimes, I am super psyched that I was at least able to do this.
  • I want to go on a climbing road trip.
    Doug and I did go on a two-week-long rock climbing trip, and it was the highlight of my year. I have trouble finding the words to describe how amazing it was to be out on the rock again with Doug day after day. Memories of that trip are going to fuel me through any hard times that lie ahead with AVN.
  • I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December.
    When I developed hip pain in the spring, I took this goal off my list. I didn’t feel that my body was up for it. Though this was very disappointing, I was happy to follow the Team Challenge adventures of several of my fellow bloggers. To all of those who participated this year: Good job! I loved reading about your Team Challenge successes.

So what is on the goal list for this year?

I have only one: to try to live in the moment as much as possible each day. I know goals are supposed to be more specific than this, but being in the moment is one of my biggest challenges. I am a person who has always planned for the future and worked hard to achieve the things I longed for in life. It seemed reasonable that if I did a and b it would at least somewhat lead to c. Barring a few surmountable obstacles, life felt like it was in my control. Lately, things feel a little different. With a chronic health condition, there are so many more variables involved. It can really make it hard to visualize the future.

In light of this, I decided that the perfect goal for the upcoming year is to focus on the present. There are so many beautiful moments in each and every day. In fact, this trip to Wyoming has been full of them:

  • Sitting down yesterday afternoon to write stories with Doug and his brother and then hearing my niece read them out loud, carefully sounding out each new word.
  • Taking a nap and having a contentedly purring cat curled up next to my chest.
  • Flying over sledding jumps and giggling like a little kid.
  • Dancing with my niece in the kitchen to Katy Perry tunes.

So here is to a great 2013! I may not know what the year will bring but I do know that by focusing on the present, I won’t let any of the joy it holds slip by unnoticed.

Catching air on the sled hill.
Catching air on the sledding hill.
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Dealing with the anxiety of a new condition

Happy holidays everyone! I hope that you are having a joyous season and are looking forward to the New Year.

After a rough week, some holiday fun is exactly what I needed. I had several days off from work, and got out to do some active things to get my mind off my recent avascular necrosis (AVN) diagnosis. On Saturday, I did a Rainier training hike up Bear Peak in Boulder, CO, with Doug and his Dad. The hike gained over 2,000 feet of elevation in roughly 3 miles and provided a great workout. I found that my pack did not bug my shoulder as long as I tightened the hip belt enough so that the weight was carried mostly on my hips (thank goodness for a great stoma placement that sits below my pack’s waist-belt).  I usually use two hiking poles, but skipped using the left-hand one so that shoulder wouldn’t have to work too hard.

Hiking with one poll while resting my left shoulder.
Hiking with one pole while resting my left shoulder.
Goofing around and testing out my shoulders on the summit of Bear Peak.
Goofing around and testing out my shoulders on the summit of Bear Peak (8,461 feet).

The next day I went to the gym for some Zumba (minus most of the arm motions) and then did a leg workout on the weight machines. On Christmas Eve Doug and I spent a little time up in Boulder where we enjoyed lunch at an Italian restaurant. When we got home, I baked gluten-free cookies in various fun shapes including trout, dinosaurs, and Christmas trees. Next day, on Christmas, we met Doug’s parents at Loveland Ski Area, and I also called my parents in Washington to wish them happy holidays from the lodge. It was a bluebird day on the slopes, and the fresh overnight snowfall made for some awesome boarding. I was concerned that pushing myself up into a standing position on my board after falling or sitting would hurt my shoulder, but it felt okay. My body is a little sore today, but that is to be expected as it was my first day of snowboarding this season.

Enjoying Christmas at the lodge with hot cocoa and cookies.
Celebrating Christmas at the lodge with hot cocoa and one of my homemade cookies.
The sun sets as Doug and I get some final runs in.
Enjoying the mountain light after a long day on the slopes.

When I was recovering from ostomy surgery and was dealing with grief and anxiety, I found that keeping busy and getting out to do things with my family and friends helped me feel better. I am finding the same thing is true as I deal with the uncertainty of a new condition.

That said, I have also found that the anxiety levels that have come with my diagnosis of avascular necrosis have felt 100 times worse than what I experienced with ulcerative colitits and my ostomy. I think this is due to several things. First, other than anti-inflammatory meds for pain and physical therapy to help maintain range of motion, there aren’t really any treatments to pursue at this time to halt the progress of my specific case of AVN. From my previous life experiences, when I had an injury or illness, there were always steps to be taken to try to heal the condition and help things improve. It feels very new and foreign to me to have a condition that likely won’t heal and is degenerative.

The stats also aren’t as promising with AVN as they were with my ostomy. Before my ileostomy surgery, I had heard that over 90% of people who had the operation for UC were happy with the results. (I certainly am!) Though there hasn’t been much research on steroid-induced shoulder AVN, I did find a few prognosis statistics in online medical textbooks and journals:

  • 55% of those with humeral-head AVN from steroids get it in both shoulders
  • 76% of those with shoulder AVN also get it in the hips (and 2/3 of that 76% get it bilaterally)
  • 90% of those with AVN in the shoulder due to steroids eventually have it show up in another joint

Third, I am having trouble finding hopeful tales out there of people who have had steroid-induced AVN and went on to lead athletic lives. If you have had AVN related to prednisone and went on to climb, snowboard, backpack, etc., or know someone who has, please email me! When I was getting ready for my ostomy surgery, though there were horror stories out there, I was able to find at least some websites related to the athletic things people were still able to do without their colons. I am trying to find such inspiration for AVN.

Recently, I realized that I needed to get some help to deal with my heightened level of anxiety that came with the recent diagnosis. I couldn’t concentrate on anything, and I was a tearful, scared mess. After my fourth sleepless night in a row, I tried to lift a glass and found I was shaking so badly from anxiety that the water was practically sloshing out over the sides. I sat the glass down, and immediately emailed my primary care doctor. I must have reached her at a good time, because within two minutes my phone rang. We talked for about 20 minutes about the current turn of events and the anxiety. She made me feel so much better and told me that I had dealt with UC and my ostomy so well, but that this was likely just one thing too many for my mind to deal with. After our conversation, I decided to give some medication a try. She also recommended combining the drugs with counseling and meditation, so I have an appointment with a counselor in January and am taking a refresher course for mindfulness meditation in a couple of weeks.

I have always been very thankful that anti-depressant and anxiety medications are available. I know many people who have been helped with these drugs. However, this was my first experience taking them and, just like with my ostomy surgery, I found myself wrestling with stigmas. In my circles especially, where my friends and I are into holistic treatments and solving things through diet and exercise, I really had to fight to not judge myself for needing to take this medication and for being unable to solve my problems in a more natural way. But I also knew I was miserable and that the path to wellness isn’t always so simple. It is important to use all tools available. I am hoping that counseling, medication, meditation, exercise, physical therapy and the support of my family and friends will form the perfect combination to get me through this.

With that said, I promise that I will get back to writing about more things ostomy soon. Before finding out about the AVN, I was working on a post about some great ostomy wraps. Stay tuned for that and my continued Rainier-training adventures.