No more expecting the worst

When I woke up this morning, I had anticipated getting so much more done including writing a different blog entry than this; one that included a short new video. Instead, all I managed to check off my list was a physical therapy appointment, grocery shopping and a very messy appliance change with an uncooperative stoma which led to extra laundry and some other clean-up duties. So much for expectations!

One good unexpected thing that happened today was that I got my hip MRI results. I didn’t think I would find out what the test revealed until tomorrow. My primary care doctor told me that the radiology report showed some tendinosis in the joint, but no avascular necrosis. Before I throw a huge party, she does want my orthopedic doctor to also look at the MRI to make sure he concurs with the findings. Still, I am hugely relieved by the news as I would think it would be pretty unlikely that something wasn’t caught in the MRI.

I realize through all my recent hip pain woes,  I was hoping for the best, but preparing for and anticipating the worst. The pain in my hip has felt exactly like the AVN in my shoulder and I was really dreading getting the MRI results because I was almost certain they would say that I had developed the disease in another joint. Every research study I could find on steroid-induced shoulder AVN said that it was common for  it to also show up in the hip joint. How could my worsening hip pain not be caused by AVN? It seemed like a given and yet it turns out this is not the problem. The ironic thing is that I originally thought my shoulder issue was tendonitis and it ended up being AVN.  Now I was sure the hip problem had to be AVN, and here it is likely tendonitis!  Again, so much for expectations.

More and more I am finding that trying to anticipate what is going to happen with my health conditions is completely futile. I have always found it to be very important to research my health issues in order to make the best decisions possible regarding treatment options, but at some point I have also found it necessary to surrender to the many unknowns and simply put my trust in my doctors.

I have come across so many stories of people whose AVN has been missed in tests, so of course I start to wonder if that could end up being me. However, it makes me miserable to constantly speculate over whether or not things are being treated correctly, or whether or not I am doing absolutely everything I can to control the outcome of a disease. I went through this with my ulcerative colitis. There was always one more opinion I should get… one more diet I should go on… one more try this.  Eventually all that wondering just got to be too much for me. I am at that point with the avascular necrosis. My biggest hope right now is to simply find a doctor I am comfortable with for this condition. I have an appointment with another orthopedic doctor soon who was highly recommended to me to get another take on my AVN case, but once I consult with him, I am going to ride this out and see what happens.

From now on, instead of hoping for the best, but expecting the worst, I am going to try to hope for the best and trust that everything will somehow work out.

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8 thoughts on “No more expecting the worst

    1. Thanks Darren. I feel so much more at peace with everything… even if I were to ever get AVN in another joint. Now I just need to get my tendon healed up in time to at least get some training in for Mount Rainier. This is going to be a bit of an challenge, but I am working closely with my physical therapist to get there:) -Heidi

  1. Great meeting you tonite! Fingers crossed you will conquer this AVN as well! I feel so selfish taking so much of your time at the meeting! Shannon

    1. Shannon,
      Please don’t worry about taking up my time. I was really glad to see another person join the group and enjoyed talking to you. Just wish we would have had longer to chat. I love attending the meetings and have met many great people there. It is important to get the support you need before surgery, and talking with people who have been through similar things helps so much. And this is all coming up fast for you so it is extra important to get the answers you need! I don’t know if you came across my post about stoma placement yet, but here is the link in case you haven’t: https://ostomyoutdoors.com/2011/10/30/a-dot-marks-the-spot/. -Heidi

  2. Heidi,
    I’m enjoying reading your blog so much and I’m thrilled for your news. I’ve been experiencing recent hip pain and fearing what is possibly damage from high dose steroid use as well.

    On another note, when I read this post, I had an exciting realization. When I read “messy appliance change” I immediately imagined you switching out a nasty fridge or stove. This was the first time the word “appliance” didn’t bring to mind my ostomy supplies. I guess my point is that after a while, these words and feelings fade and things get normal. Over time, we get a new normal.
    Thanks for all your sharing.
    Karen
    mykarekit.com

    1. Great to hear from you Karen! That is hilarious about the appliance. I remember thinking that was a really strange term for an ostomy pouch when I was first learning about surgery.

      You are so right that things start to feel normal after a while. There have been some days when I have been out snowboarding lately that I have completely forgotten about my pouch until I wander in the bathroom and see it. Then I laugh and think “Oh yeah… my pouch… I better get to emptying that!” It has just faded into the background so much.

      Chances are your hip pain is nothing, but given your history of steroid use, it certainly can’t hurt to get it checked out to be on the safe side. The hip is the most common site for steroid-induced AVN. Doctors usually start with an x-ray because it is cheaper and later stages of avascular necrosis will show up. If nothing shows up on the x-ray, they will move to MRI to see if a person has early-stage AVN which won’t show up on x-rays. There are treatment options available for early-stage AVN of the hip that are no longer options once the disease gets to a later stage. That is why early detection is so important… especially with the hip which is weight-bearing. Shoulder AVN, like I have, is treated more conservatively because it is a non-weight bearing joint and doesn’t affect mobility as much.

      Wishing you the best!

      Heidi

  3. Heidi we are praying NOTHING is missed on the scans and that an excellent doctor will be put in your path. Someone who you trust, is attentive, and highly skilled.

    Keep pushing on! You rock and inspire us.

  4. Thank you Ryan and Carly! I do have a new orthopedic doctor that I think is going to be very good (though I did really like my first orthopedist too). He was recommended to me by someone else I know with AVN and also by my colorectal surgeon, who is the doctor I absolutely trust the most. I haven’t met the new doctor yet and have an appointment with him in April. He did look at my MRI ahead of time though and said everything looked fairly normal. Yippee! I still have to get my hip tendon healed up, but that will be easy compared to AVN. And you know what? I am starting to feel that even if AVN does turn up in another joint in the future, I will be OKAY.

    Every single day I think about how grateful I am that such amazing doctors have been put in my path. I feel incredibly blessed!

    Hope you make it to one of the ostomy association meetings in the future! It would be great to see you both.

    Cheers,
    Heidi

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