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Mar 19, 2013 12:14AM
MaggiePgh, we are here, just a little tired. Today has been a particularly bad day for me personally regarding pain, so I usually withdraw, try to "breathe" with the pain as I have learned to do with mindfulness-based pain management. I don't have the capsular contraction, but have multiple types of pain going on. One gets better, another flairs up. This is a 24-hour/day, 7-day/week issue, something that our providers do not really understand because they only see us for such a short visit every few months or so. It is because of the chronic pain issues that I have declined much additional treatment to "save my life" as I am often close to hoping for a shorter life rather than longer survival with more pain. No one can avoid death, but through death we can avoid pain.
I lived in Pgh until 2000, have very fond memories of that city, but don't have any idea about who you would see for pain management or other help.
Sometimes you need to just vent about the pain, but in case you are wanting to DO something, you may want to consider having implants removed, although that may not relieve the pain. You may want to see a palliative care specialist or pain management specialist. I am seeing both. I am seeing an interventional pain management specialist who has been able to give me some relief from the pain in the back of my ALND arm with an ultrasound-guided injection of the intercostobrachial nerve which was cut during surgery and now causes a lot of pain. I don't have good management of the searing burning pain across my chest from the BMX; I think it may have been triggered by post-op infected seromas; I have not been pain-free since surgery in Oct. 2011. There is also a tightness from adhesions, which are helped by myofascial release, which was originally done by a physical therapist and now I have a massage therapist who can do the same procedure since I am no longer eligible for PT and have to pay out of pocket for this.
And I still have the pain in my fingers and arms from the chemo, which started in Oct. 2010. This is worse with fatigue, sometimes better with pain meds, sometimes not. Pain just sucks.
I have been reading a lot of theology, specifically process theology, and am trying to find my personal "transformation" through this experience. I don't believe I have been given this pain and suffering for any reason or sin, but I do know that how I respond to it can be helpful or harmful to me and others. So I am trying to find some element of beauty and joy each day, trying to find a way to help others so that I do not become bitter and angry (have already been down that road, made me even more unhappy than I am now).
So, MaggiePgh, yes, we are here. You are not alone. If you start another thread, let me know, I will participate, or continue posting here and I will "walk" this path with you as I have this as one of my "Favorite Topics." I have also tried lots of other things to deal with the pain, can share with you as needed. Peace.
Linda - "Loving to learn; learning to love." "Gratitude leads to joy. Joy leads to prayer. Prayer leads to gratitude." "Oh, what fresh new hell is this???" - Sheldon Cooper, The Big Bang Theory
7/14/2010, IDC, 3cm, Stage IIIC, Grade 2, 19/23 nodes, ER+/PR-, HER2-
8/2011, IDC, Stage IIIC
9/2012, IDC, Stage IIIC
12/2012, IDC, Stage IV