Hereditary Angioedema and Mindfulness

mindfulnessThese last few months have been rough for me. Despite being in an overall great place mentally, I have encountered a lot of stress between moving states, starting a new job, one hospitalization, road trips to see my family, etc. These things might not be that stressful on my mind-state, but my increase in HAE attacks shows that I am being affected, even if it’s on a level that I cannot notice any other way. For those that do not know, Hereditary Angioedema is a rare and life threatening genetic blood disease affecting about 1 in 10,000 to 1 in 50,000 people worldwide. Here’s an explanation from the HAE Association:

HAE patients have a defect in the gene that controls a blood protein called C1 Inhibitor. The genetic defect results in production of either inadequate or non-functioning C1-Inhibitor protein. Normal C1-Inhibitor helps to regulate the complex biochemical interactions of blood-based systems involved in disease fighting, inflammatory response and coagulation. Because defective C1-Inhibitor does not adequately perform its regulatory function, a biochemical imbalance can occur and produce unwanted peptides that induce the capillaries to release fluids into surrounding tissue, thereby causing edema.

People that suffer with hereditary angioedema often experience many health traumas and major hospitalizations early on in life. Considering this, the potential for generalized anxiety disorder and PTSD are very high. This is an area where there is very little dialogue (at least so far) happening in the medical field. So many of us are used to just having to deal with this disease, even encountering doctors that often misdiagnose us or question what we are feeling. We are used to becoming very strong individuals (I like to think of ourselves as warriors 😉 ) and come up with our own ways of handling the stress, anxiety, and trauma. A whole other can of worms is the tendency for HAE patients to develop a codependency addiction, but I will save that one for another time.

My goal here today is to explore what we can do to survive and heal these moments of intensity in our lives. I have been making the conclusion over and over again, that besides my yoga practice, what keeps me sane is the practice of mindfulness meditation. Psychology Today has a great article on mindfulness meditation and how to practice it. The best and most simple explanation that I have found on the method is from Vietnamese Zen Buddhist Monk, Thich Nhat Hanh. He says:

The exercise is simply to identify the in-breath as in-breath and the out-breath as the out-breath. When you breathe in, you know that this is your in-breath. When you breathe out, you are mindful that this is your out-breath.

Just recognize: this is an in-breath, this is an out-breath. Very simple, very easy. In order to recognize your in-breath as in-breath, you have to bring your mind home to yourself. What is recognizing your in-breath is your mind, and the object of your mind—the object of your mindfulness—is the in-breath…

So the object of your mindfulness is your breath, and you just focus your attention on it. Breathing in, this is my in-breath. Breathing out, this is my out-breath. When you do that, the mental discourse will stop. You don’t think anymore. You don’t have to make an effort to stop your thinking; you bring your attention to your in-breath and the mental discourse just stops. That is the miracle of the practice. You don’t think of the past anymore. You don’t think of the future. You don’t think of your projects, because you are focusing your attention, your mindfulness, on your breath.

img_1289It is that simple. The beauty of this simplicity is that there is no excuse not to cultivate it. The breath is always there so this practice is always available to us. We don’t need some elaborate alter, a fancy meditation cushion, or a zen gong alarm clock. All we need is the breath and the intention to become aware of it. I firmly believe that this is a practice everyone can benefit from, not just people suffering with HAE or any other trauma. When we cultivate more inner peace, we are contributing to the overall peace of the world. And who doesn’t think we could all benefit from that?

Now, for my fellow swell buddies– When do we meditate? Ideally we create a consistent practice for the same time each day, preferably right in the morning. But there are many other times too.

  • Those moments when you’re experiencing airway paranoia. You know the times– “What’s that tickle in my throat?” “Is my airway closing?” “Is this just a sore throat?” “AHHHH Intubation!” I know many people can relate to this, even if some have never had an airway swell. Unless your airway is actually closing, we can all take five minutes to sit and breathe. Another amazing thing about this practice is that we can all experience heightened awareness  and can better determine if this is an actual attack, or if we are just freaking out.
  • The ER. Oh yes. We are all veryyyyyyy familiar with these! Sometimes they are places where we find a true sense of peace, more often than not though, they are really intense and stressful places. Finding the right doctor. Knowing more about your disease than the people who are sticking needles in you. Hearing other people crying or wailing or vomiting. The florescent lights. The constant beeping. Even here we can take the time to pause and connect with our breath.
  • When the insecure thought tangents start. “Will this person accept me when they find out I have this disease?” “Will I pass this on to my kids?” “Am I wrong for passing this on to my kids?” “Am I bipolar because I’m freaking the F out?” “Is it wrong to feel scared?” “Does anyone understand?” Unfortunately this inner dialogue is a side-effect of trauma and a process most of us have to work through. When we take the moment to pause and breathe, we can allow ourselves to detach  from the negative thought stream. We can at least look at them as if they are not us, but just a thought we are having. They will pass.

There are many other times when we can use this practice to our benefit, but we all need to learn to be our own judge of that. I am not perfect. I am not in a place of perfect peace about Hereditary Angioedema. In fact, this blog is coming out of a very long night of an emotional breakdown. I was completely and utterly exhausted and yet, I could not fall asleep. Which starts the very vicious cycle of emotional distress. All the negative thought patterns start arising, the anxiety kicks in, I become upset and cry. Which makes me only fear swelling more to point where I eventually do start to swell. My point in being honest is that these difficult moments will come. Again and again. Breakdowns and pain will happen. ER visits are likely. Wanting to give up will happen. But through mindfulness and learning how to be with ourselves, we can be happier. We can be healthy in many other ways. We can be secure in who we are, and we can cultivate a sense of inner peace.

Living with Hereditary Angioedema is not easy and sometimes we are not always capable of being these amazing and strong warriors. We need to allow ourselves to be supported. We need to take partners that love us and are willing to put up with the antics. We need to take care of our bodies. We need to look at the food we eat as medicine. We need to exercise and stretch carefully. We need to live this life to the fullest. We need to give back an help others. We need to be grateful. And we need our breath.

Dare to Be

When a new day begins, dare to smile gratefully.

When there is darkness, dare to be the first to shine a light.

When there is injustice, dare to be the first to condemn it.

When something seems difficult, dare to do it anyway.

When life seems to beat you down, dare to fight back.

When there seems to be no hope, dare to find some.

When you’re feeling tired, dare to keep going.

When times are tough, dare to be tougher.

When love hurts you, dare to love again.

When someone is hurting, dare to help them heal.

When another is lost, dare to help them find the way.

When a friend falls, dare to be the first to extend a hand.

When you cross paths with another, dare to make them smile.

When you feel great, dare to help someone else feel great too.

When the day has ended, dare to feel as you’ve done your best.

Dare to be the best you can –

At all times, Dare to be!
― Steve Maraboli

 

 

For more information on Hereditary Angioedema and how you can help, please visit the HAEA webiste.

Confronting Unresolved Fears: Taking an Honest Look at What Scares the Shit Out of Me

ImageIt has been a while since I’ve written with the intention of it being read publicly. I’m not even sure of what my intentions are at this point. To be honest, my heart is pounding as I sit here attempting to hash out my thoughts. My hands are shaking slightly, as they always do now. I feel very alive in what is coming up.

It has been a very long time since I’ve allowed myself to be alone. Alone in the sense of being on that journey through self discovery- shaking hands with your inner demons, laughing at your flaws, exploring the essence of who you really are… Being in a relationship for four years served as a buffer, in a way, between me consciously tackling these underlying and necessary experiences. I’ve always been overly aggressive with the way that I have chosen to battle uncomfortable situations within myself. I think it’s one of my greatest strengths, but it has also gotten me into a lot of trouble.

Living with Hereditary Angioedema has become so normal to me at this point. The UPS man just walked in with a months supply of my plasma treatments, and I don’t think twice about it. I don’t fear death like I used to. In a way, I am completely comforted by the fact that I could go at any time- it has taken me a very long time to get to this point. I feel amazing in my physical yoga practice right now; something has recently clicked in me where I have the ability to genuinely surrender to what my body is capable of doing. Fears of airway obstruction don’t come up like they used to while I’m practicing. In terms of me I feel great.

What I am not okay with, is the fact that there is a 50/50 chance of passing my disease on if I choose to reproduce. I have always known this and I thought there was a time when I was actually content with that… I’m seeing now that I am not. Every part of my being has always wanted kids. Not now, of course, but I’ve always known I would eventually. Insecurities, fears, and an immense amount of sadness are smacking me in the face right now. I don’t feel alright about being responsible for another being having to live with an incurable disease. And the thought of not having my own biological kids is very painful, even if it is selfish. What if someone wont want to have kids with me because of this? What if I never have kids? What if I fail at the most basic human goal in life? These are the fears floating around in my mind. It almost makes me laugh seeing them typed out. Right now I don’t have the security of someone reassuring me that it is okay, acceptable, and perfectly fine to have kids or even just feel this way. I am alone in the way I feel. In a strange sense, these fears feel fluid. They don’t feel like something I need to fight against, just something I need to process.

My happiness right now comes from my actions in the world. I am truly happy because I am surrounded by realities that I have created. I live for stoking people out and the thought of one more person being happy, successful, or having a better day because of something that I am able to do, truly makes my heart sing. So it’s interesting for me to be straddling this duality of emotions. I believe that if you don’t have intense waves of fear than you aren’t really living. And right now I feel very alive. Over and out.

You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.

-Jim Morrison

Let’s Get Personal: My Disease, My Practice, and Learning To Breathe Again

We all have those things that get us. Traumatic past experiences, stress, memories… Such simple things can make the walls of our security come crumbling down. I find writing in these most intense moments can help ease the chaos. Chaos that isn’t necessarily real. Isn’t it ll about switching your perspective to be more positive? I can see where this can become more like a journal entry than a blog, but I’m choosing to go with it anyway.

I have a crazy genetic disease called Hereditary Angioedema. My father and all my five siblings have it. It’s actually quite fascinating- we’re one in fifty thousand in the world with it which means it earned its right to be featured on an episode of House 😉 The gist of it is basically that we all lack or have a malfunctioning version of the blood enzyme that counteracts swelling. These lead to “attacks”. Without treatment, attacks last three to four days in one specific usually isolated area of the body, such as the hands, entire extremities, face or the airway which can be fatal.

I’m experiencing an attack at this moment in my right elbow. Before I decided to take a moment and reflect, I felt myself going to that unclear space in my head where all the mental chatter goes on. I experience intense emotions of resentment for having this disease, I believe that my entire day is over, and that basically I suck. Then I finally come to a place of calm, which I actually found as I started writing, where I realize that it doesn’t have to be so dramatic, that I can still have a good day, and that within a few hours of giving myself my treatment, the swelling will most likely go down- instant relief.

This disease has been such an incredible learning experience for me. The onset of Hereditary Angioedema is usually between the ages of 15 and 20, which means you have to learn to cope with it during some of the most intense and vulnerable times in life. My first airway attack happened when I was eighteen which is about two and half years ago now. Thankfully, the stars were alined in a perfect way- I was able to get to the ER of Mount Sanai just in time to be intubated and medically induced into a near coma for 6 days until the attack went away.

The aftermath was the biggest struggle. After coming home from the ICU, I had lost almost my entire body strength. I couldn’t walk in a straight line, take a deep breath, or remember something that happened two minutes before. It was a very long recovery that lasted almost a year. One of the most tragic struggles for me during this time was the “loss” of my yoga practice. The idea of attempting synchronized breath with motion would make me burst into tears. Yoga was something that was so sacred and special for me for such a long time and it was physically impossible for me to attempt.

It was a little more than a year ago that I started to get on the mat again. I constantly faced the struggles of being too weak, not flexible, tight, cracking joints and having to breathe. In Ashtanga yoga, we do something called Ujjayi breathing as we practice. In kids yoga we call this Darth Vader breathing because the sound of restricted breath sounds just like Darth Vader. This breath basically happens by moving the glottis as the air passes in and out, allowing the throat and the airway to become narrowed. Just this act alone would send me into panic, as it was so close to the sensations that I was experiencing before being intubated. I had a negative memory linked there so my initial solution was to avoid Ashtanga yoga all together.

Somewhere in the last six months I have found the emotional ability to return to Ashtanga yoga. I have a very humble practice based in the primary series, where I am steadily building strength and relearning to connect to the Ujjayi breath. I don’t experience the same panic as I did before, although my thoughts still go there from time to time.

As it always is, yoga is a practice where you learn, grow, and flourish and that is exactly what I’m experiencing now more than ever. Initially when I sat down to write, I had a negative view on my “situation” and I almost let my day get ruined because of it. Now, after writing through this process, I feel a huge sense of gratitude and motivation to just keep going. I hope that anyone who reads this can gain some inspiration to learn and grow.

I find the symbolism of the Lotus flower can best embody what I’m feeling right now. Buddhists.org offers a great explanation on it:

“The mud represents an importance in the meaning of the lotus flower in Buddhism. All humans are born in a world where there is suffering. This suffering is a vital part of the human experience; it makes us stronger and teaches us to resist the temptation of evil. When we banish evil thoughts from our mind we are able to break free of the muddy water and become one with the Buddha. The mud shows us who we are and teaches us to choose the right path over the easy one.

Finally, the lotus flower represents rebirth, both in a figurative and a literal sense. The rebirth can be a change of ideas, an acceptance of Buddha where there once was none, the dawn after one’s darkest day, a renaissance of beliefs or the ability to see past wrongs. In a literal sense, the meaning of the lotus flower in Buddhism represents rebirth as a reincarnation, such as in the Buddhist religion, when a soul leaves this world in its present form to be reborn in another.”

Happy rebirthing 🙂