finding balance in endo

I took a few days away this week to go up to my house up in the mountains. Desperately needed some alone time to recover further, reflect and just exist while soaking up the beautiful nature I love so much of the mountains!

I did some adventurous things like a hike, my first post-opertative hike at that and tried my very first try at stand up paddle boarding. It was a beautiful time out on the water!

Here I am on my hike. We did maybe 1.5 miles.
It felt great but I had to take my time.

YAY!!! I DID IT!!!!! I didn't fall in at all! It
was hard but so so so fun!

Took a quick selfie before I took off from the dock!

My few days away definitely accomplished my goals; however that is not to say that I wasn't in excruciating pain at some times, and having some level of pain at almost all times. Luckily I had packed all of my crystals, essential oils, incense and medications to try to keep in under control.

This crystal is green calcite, for healing and new birth

If you've been keeping up with my blog you may have read my post called What Else?, Part One. That post has some things in it that are important to understand before I continue with my explanation of an important epiphany that I'd like to share. So I'll share a brief statement of that blog post:

Whatever struggles you're experiencing may feel or seem overwhelming, I feel that way sometimes with what I'm going through. But the current mantra I'm working with is "what else is true?" So I am learning to be able to lift up out of my pain, which is very real, and see something else that is also very real but more positive. For example on this morning of Independence Day, I am in a lot of pain while writing this, BUT what else true?! What else is true is, I am in the beautiful mountains with people I love, I am going to be going to a firework show tonight and I know it will be amazing, I am able to revel in and deeply breathe in the healing properties of nature. 

With my amazing therapist I am working on this concept nearly constantly as I have been in so much physical and emotional pain that it has become nearly overwhelming. While it is a very helpful technique, sometimes I find it nearly impossible to utilize. Why, I began asking myself. And after some thought, reflection, meditation it finally came to me. I'm still working on how to express it as accurately as I can but here goes:

So with endo in particular you have to fight fight fight like nothing else to prove to the doctor that something isn't right, fight not to be mistreated or ignored- and that includes friends, family not only medical professionals, since people do not understand the disease or the amount of suffering that it causes, you have to fight to have the right, so to speak, to not feel well.  I don't know if that makes any sense.  So even though the disease isn't something we want, we have to hold onto it.  It feels scary to follow my mantra of "what else" sometimes.  That doesn't mean I don't want to use it.  I do it when I can, using the what else is true really, really helps.  Sometimes the pain feels too overwhelming and I just don't think of it. But I think my occasional shying away from that technique is much deeper than that.

You know that syndrome that people get after being held hostage and they begin to sympathize with their captors?  That is kind of what this feels like. Because of the legitimate hell I've gone through with this disease, the 5 surgeries I've had, the friends and jobs I've lost due to this disease, there is some type of strange emotional response regarding this disease and how it impacts my life.  This is where it begins to splinter into being even more complicated aspects of how this impacts me. This is hard, but I'm going to try to explain my deepest feelings in this regard. 

First let me say that this is a process and I'm definitely not far along in it but I am able to reflect in on myself and discover these things, when I allow myself.

So one thing I have noticed in this process is how much guilt/shame/blame I have in regards to my disease.  I am the kind of person who completely over apologizes and takes everything personally and I can somehow blame myself for anything. And am quite skilled at beating myself up. I am working on this but this is the internal tape I've played in my life for most of my life, so that isn't an instant process. However, I have a feeling that this blaming myself and having such a cloak of shame around my initially having endometriosis and then again, more intensely with each relapse I've experienced following each surgery.

Another issue that this disease has stirred within me is a sense of near hopelessness. It isn't that I don't want to have hope, but I've had such devastating experiences with hope and having it broken for so many years with countess medications, even more doctors and even surgeries!! I feel like I can no longer afford the severe cost of hope. I am struggling with finding a balance between hope and being realistic; this is a real current issue in my life, as I am seven weeks out from another surgery that I thought would be "it" for me, and alas it has not been. I do believe this might have been the best surgery I've had, and had it done by a super meticulous and experienced robotic surgeon; however, now we fear the disease is somewhere he wouldn't have had access or even knowledge of it existing during my procedure- so it feels never ending. This was another time where I lost a lot of hope, while losing my last female reproductive organs at the same time (ovaries).

Because of how hard I had to fight for my diagnosis and even for adequate, respectful, knowledgeable medical care, it is hard to put my weapons, so to speak, down. It is like I had to be on constant guard and ready to "prove" to physicians what was going on. I do not believe this is how the medical system should work. I had repulsive things said to me over the years from doctors: I've been told my problem was that I wiped too hard when I go to the bathroom, I've had a surgeon tell me that I didn't have anymore endometriosis and I needed to see a dietician-- both of these experiences are a complete dismissals of my experience. In someways I feel like I have to stay very vigilant in order to have any relief or options given to me. Its almost like I feel like if I let go a little bit of it, or ease up it will get worse and I will not get the treatment options that I need. This disease, more than many others, you have to truly be a very educated, strong, determined advocate for yourself or you'll get completely ignored and mistreated. 

With how hard I had to fight to get diagnosed It is almost hard to let go of, or hard to get it out of my immediate thinking part of myself. I have a feeling that this is something that can only be understood when you've been there also.  I also have a feeling that part two of this post will be up in the coming days! 

Signing off in peace and love,

♡ stephanie ॐ