Monday, December 19, 2016


Adam suggested that I put a warning before this post.  I will be talking about medical treatments that might cause a bit of a trigger in some people.  Just to let you know if you decide to keep reading.

Thursday nights tend to be my treatment nights.  So what exactly does treatment mean?  I have been a little vague about this, mostly because the treatments cause people to cringe.  When I was first diagnosed I was seeing a therapist to have someone to help me talk through a lot of the emotions and things that were going on.  Even my extremely funny and low key therapist looked at me and said "why in the world would you do that?"   Just to give you an additional warning.

Once a week I deliver my medication directly into the bladder.  This involves catherization, which I do myself.  Adam and I have come up with lots of jokes and ways for me to laugh through this process, to accept that it helps and so it is worth it.  There are plenty of risks associated with administering this medication, but I haven't found any medication that doesn't have some sort of risk.  I am extremely grateful that it is a method that works for me and even if it can be messy, painful and awkward.

This last Thrusday, the treatment did not go smoothly.  I ended up having to use multiple catheters, wasting a dose of medication and feeling utterly alone.  I didn't feel like I could call someone, because I didn't know of anyone that could relate at that moment.  I felt detached from "normal" people, I wanted to protect myself and I felt this huge wall between me and that life I was still grieving.  The tears started...

Eventually I reached out to someone, and because this person is much wiser then I will ever be he simply asked me why "protection."  It is a good question.  I don't need protecting, I was not afraid of anything.  My body was responding to being poked and prodded, it doesn't know what it medicine and what isn't; so it is reacting, releasing neurotransmitters that say "WTF."   So of course my reflex is to want to know what's wrong, to want protection.  

I kept thinking about this for the hour that I am supposed to lay on different sides and make sure the medication coats my bladder.  My body it releasing a lot of "WTF" a lot of the time.  The pain is going down, I am ecstatic when the level stays at a 5 for a couple of hours.  I am so happy that I am sleeping for five hours a night sometimes, but my body still has a while to go before "WTF" is not my set pattern.

The old part of my brain wants to keep pain private, because it might be a sign of weakness.  Even if part of me accepts that I am not my illness, it takes effort and will to overcome all those neurotransmitters that are constantly being released.  It is almost like split myself in two, I need to be fully consious of my breathing and posture and at the same time need to focus on everything else.  When the pain spikes it is a not so gentle reminder to check in with my breathing and posture, which means I tend to tune a lot of things out.  That is where I am right now, learning to breathe and navigate the world.  

My heart whispers to me, it comforts me, it encourages me to reach out and it encourages me to find new ways to soothe those neurotransmitters.  My heart is the stable, calm eye of this hurricane, but it also knows there is a hurricane.  Slowly my heart is helping to establish and reinforce that new neural pattern, that I am not my pain, or the failures or the successes.  Slowly my heart will guide me to dropping more and more walls and trusting the breathing and posture will be natural.  

Question of the day:  Who in your life is safe to reach out to?  Who or what understands that you are not broken, you just need a bit of stability in the hurricane?


  1. Hi Sweetie:
    I don't read your blog nearly as often as I should, but this one called out to me. You can talk with me any time. As you know, I have been through the pain, recovery, more pain ... cycle, many times. It takes the kind of personality I know you have to push through this, but we all need some support every now and then. Don't feel weak to reach out. It's why the universe made us social animals ... so we would have help and support when we need it.
    And always remember, as I often tell my girls ... you come from a long line of tough old broads!!
    Much love to you!

  2. Thank you so much for your kind words. I do think of you often and how much you have been through. Sometimes I also think about leeches when I need a laugh. It is just strange that sometimes I do the exact opposite of what I need, because I haven't practiced reaching out enough.

    Merry Christmas! Love you!