Saturday, October 10, 2009

Diving In

Okay, let me start off this post by making one thing absolutely, perfectly clear: I believe in what is commonly termed "Western medicine." I have a huge amount of faith and trust in my doctors and I follow the routines they prescribe for me (not always without question, because I also believe strongly in understanding and advocating for your own health, but generally speaking if they say so, I do it). I believe some things in life are beyond our immediate control, and this includes our genes and whatever mutations might come with it. I believe that sometimes you can do everything right and still not always achieve a desired outcome. In short, I believe that diseases like cystic fibrosis are unpredictable and at times uncontrollable, and I am a traditionalist in the sense that I treat my CF with modern medicine, therapies, antibiotics and hospital stays.

I have also worked hard not to "blame" myself for the progression of my disease -- although I acknowledge that I haven't always made 100% perfect choices when it comes to CF management, I also know that I made the choices I thought to be best at the time, and that new opportunities and growth came from those choices that helped shape me as a person, so I can't be "angry" at myself for my choice to, for example, enter a tough and ridiculously stressful profession that at times left me choosing between work obligations, treatment, and sleep. Over the past few years I have realized one thing that I cling to: choices are made, and they have an effect on the future, but they can't be unmade later just because of an undesirable outcome. Instead you have to keep on choosing how to go forward, and for me it took a long time to choose to forgive myself, see the validity in the decisions I had made and how they had helped my life (even if they weren't perfect), and then move on with what I had to face next without a lot of defensiveness, or guilt, or anger. I'm still not perfect at this -- I have a type A personality so I always look for identifiable causes and "solutions" to problems, I'm not great at working within a spectrum of non-black and white answers -- but I'm learning. And I love that.

So where does all this self-reflection lead? Well, in a kind of uncharacteristic move for me, I'm starting to do what is called "energy work" (actually, it's called a lot of things by a lot of different people, from "healing" to "theraputic conditioning"). Call it what you will, it basically means that I'm lucky enough to have some amazing people in my life who are helping to guide me towards a new way of thinking about disease and health. I haven't delved too deeply into this yet, and I'm just starting to even become open to exploring this whole new world, but my understanding is that this is about mind/body alignment, and understanding how thoughts and memories and things we hold inside us affect our physical selves and our overall well being.

Um, and just for the record (before you all abandon my blog in a fit of justified anger and frustration): I do not believe that any of this will CURE my CF. Not for a second, not an instant, and that's not even my goal. In fact, one of my new guides in this process (introduced to me by a fabulous woman whose positive energy is absolutely overwhelming) was herself a nurse practitioner for several years. She understands disease pathology, and she knows that CF isn't going away, and that in fact much of the damage to my lungs may well be flat-out irreversible. Her emphasis is on HEALING (as in, making one healthier), not on CURING (as in, altering one's genes -- at least in my case). The goal is increased health and positive change in mental energy, not "sayonara, CF, see you later" (awesome as that would be -- hint, hint CFF). For me personally, this most likely will mean an emphasis on strengthening on the body and preparing myself mentally for transplant, as well as developing techniques to hopefully be in the best shape possible for recovery. In other words, I think I need help preparing my "sick" body to be "healthy."

No, I won't be giving up my CPT and O2. If she tries to take away my xopenex and TOBI she just might find herself attacked by a very overprotective Shorkie (trust me, what he lacks in size he makes up for in other departments). And I just don't think either of us would be very happy with the results if she asked me to give up my enzymes. (Sidenote: eww. Enough said.) In fact, one of the principle tenants of her style is that the person must make CHOICES and then follow through with them. In my case, if I choose to make my body (and hopefully lungs) stronger, it then becomes my responsibility not only to focus on that goal and believe that I can do it, but also to take steps to make it possible. You can't, according to this philosophy, simply choose to have perfect PFTs and then sit around to wait for it to happen. Being positive and focusing on the goal are only a part of the formula, to make it all add up there also has to be action a willingness to dive headfirst into the fray to get yourself there. (For some reason, this really made me think of Ronnie.)

Okay so I've written this long, rambling post about all this stuff I plan to do. Scratch that, all the stuff I CHOOSE to do. Because I want to start this out with a public declaration, however silly and possibly even narcissistic it might be, that I choose to be open to a new way of approaching my health. I choose to get stronger and to reclaim my body for ME, not the numbers. I choose to be happy and I choose to trust that transplant will happen for me at the right time, with the perfect lungs. I choose to believe that my body will accept these lungs as the gift that they are. Most of all, I choose to believe that God has this worked out for me, that with faith and energy and work on my part everything will be as it is supposed to be. And I choose not to blame or punish myself for the choices that might not work out perfectly, because frankly I just don't need that in my life.

I guess I'm writing this in the hopes that I'll find some sunken treasure somewhere deep down in a sea of self-healing of which I've (truth be told) always been a bit wary, if not flat out distrustful. Moreover, I'm writing this because I've decided to dive in, with as open a mind as possible, and I figured this would be a great place to make the first splash. I don't expect much to change directly here on the blog, but I do plan to occasionally update you all on my project, so I figured you needed some background.

And anyone who cares to join me on my little swim, feel free to make some choices of your own -- write them down (either here, on your own blog, or somewhere you feel safe doing so) and start believing you can make them happen, then take steps toward making them possible. I can't promise results (I'm an experimenter here myself), but I promise good company along the way.


  1. I have worn crystals and done guided meditation since I was a young teen, and I get Reiki treatments now. I absolutely believe in all of it, and think that's good enough for me. Let me know your thoughts or if you want me to write a post on CG about this.

  2. CG: idk about Piper, but I would love for you to expound on all this. I'm a big fan of modern medicine and healing-by-chemistry, haha, but I also grow more and more convinced of its limits and risks, and I beleive strongly in the power of the mind...although I don't always act as strongly on said belief. I'm particularly fascinated by Reiki...

    So yeah, more info please! From both of you (and anyone else with experience with this!)


  3. I just found your blog recently. I have to say that your post excites me. To explain, I can't be brief enough to fit into the comment limitations... I wanted to comment, so others who might share the same interests could read my response. But, I way exceeded the max character limit.

    I'll look on your site for an email address.


  4. This is a great post, need to try some of this energy-healing. I hope it involves massage! Good luck with the process, waiting is so hard!

  5. Piper, You totally intrigued me when you wrote "I can't be "angry" at myself for my choice to, for example, enter a tough and ridiculously stressful profession that at times left me choosing between work obligations, treatment, and sleep". I applaud you for pointing out that all these things are choices that we make, even if we don't realize it! And I really have to try to get myself to that kind of position where I'm not feeling guilty and torn (I'm not even close to the anger stage) between the profession, the family obligations and my own health. All three of which place demands on our time. Yeah, you're right. It's all about choices, and then following through with those decisions (which is a whole 'nother issue!)

    How does one go about finding someone to help guide through all this? I think that a sense of balance or stability in all parts of life is essential, but how does one go about finding that balance and keeping it that way? That's the part that I'm struggling with.

    Ack. Sorry to ramble on. I had no idea there was even a term for such a concept or process much less "energy work". Please keep posting about it. I really feel like I've got so much to learn. Thanks, ~Juliet

  6. I'm glad that you recognize a nurse practitioner's view on holistic approaches as well as medical ones. That's the prime difference between NPs and Docs for the most part. I hope that things work out for you in the future.

  7. piper i totally need to dive in with.positive mind to heal. i guess for me transplant happened so fast but recovery so slow it has me thinking negaative. glad your preparing now with such a positive and open.mind


  8. Hi Piper,
    I have been where you are now. I truly believe we are one in the same. Stay postive and find that energy within you. Your past posts have helped me find the positive in all of this. We have a long journey ahead of us an need to channel all the positive energy we can into our lives. I hope you find that positive energy and destroy all that anger. Thinking of you!

  9. hi piper,
    this is monster from cf2chat. i just, just (literally moments ago) finished a surprisingly good book that talks about how the body harbors all kinds of mental pathologies because of our unconscious (or conscious) inheritance of Cartesian dualism. after all these years it seems we still objectify the body and treat it like a machine, and it damages the way we engage with the world. the book concluded that the best way to resolve the disconnect is meditation and "mindfulness" which was a pretty typical answer, but a fascinating way to get there. anyway the book is called 'erotic morality' and in spite of the creepy title, it's not sexy at all. i'm a hardcore fan of western meds, but i suffer from a lot of anxiety issues and ptsd, which i think can benefit a lot from the kind of thing the book espouses and what you're trying. so, go you!