The long stroll

Last night I watched a video of a reality TV star giving a speech at a Lyme benefit. It was comforting and heartbreaking to watch. With limitless money, support and doctors at her disposal she still went years without a diagnosis. Even after 3 months of intensive treatment, she continues on this twisty road of unknowns when one is attempting to heal from Lyme Disease.

What struck me most about the video, oddly enough, was when she talked about her head pain and the feeling of swelling in her frontal lobe. Each time she described it, I almost wanted to scream, "That is what mine is like!" It was comforting in some way to hear someone use words to describe a pain that I call, "Aliens trying to get in or out of my skull," and what for me is really indescribable.

Lately I have been doubting my instincts and wondering if "something else" could be causing this two year debilitating head pain and feeling of brain swelling. I have been going through the Mayo clinic headache list with my regular doctor and trying "this and that" without any change. A referral to a neurologist is in the works just to make sure there is not something else causing this head pain. And, with the referral come all the doubts. Will he believe me? Will he understand? Can he help? Blah blah blah.

My angel of a Chinese medicine practitioner, aka Quinn, who for whatever reason I trust implicitly, was so gentle with this little doubting one when I saw him over the weekend. He thought seeing a neurologist just to rule out any other cause was reasonable, but reminded me that all of my symptoms and history all point to tick borne illness (Lyme and co-infections). "Looking at the whole picture," he said, "I can't imagine what else it could be." Oh Quinn, I love how he looks at the whole picture, but wonder why it is so hard for all docs to do that. I feel so grateful for him.

I may be on the slow track when it comes to healing from this disease because my body can tolerate so little treatment at a time, but I know I have someone by my side that has run this race before with others. That image reminds me of a friend's post this morning. She is recovering from a foot injury and about to run her first marathon. She mentioned how she is connected with a pacer and will be in the 12 minute mile group to make it a 26 mile stroll. That's what I am doing with Quinn, the long stroll (likely 3-5 years) toward wellness. I WILL get there!

Anniversary - oh my how things have changed

Last year at this time I was lamenting that it had been a year of constant pain in my head. The pain has not changed, but something has. The daily pain, with spikes so severe there are no words to describe them, still sits on me like an albatross. Maybe that is the difference. It may be there (attempting to weigh me down or claw into my back), but sometimes I don't really notice. I am grateful when I can mostly go about my day without giving it much attention. I do what needs to be done - the 50 pills and potions - the this and the that. And sometimes, by some miracle,  I don't lament having to do it to keep going. Sometimes, even occasionally, to achieve this distance and acceptance feels like a bit of a miracle.  Living with Lyme disease, attempting to shift this body towards health and wellness and live my life is such a dance. When I can immerse myself in the dance and not keep track so much of the data, it somehow isn't as overwhelming. Yes, March 20th marked the two year anniversary of the severe flare of Lyme disease in which my life dramatically changed. But, instead of lamenting it, I celebrated the Spring Equinox with my family. It was about new beginnings, telling stories and having fun. Somehow that is what must happen, even amongst what sometimes feel like intolerable symptoms. Again, the dance of long term illness. Grateful for even the smallest shifts in these last two years. Looking forward to more shifts toward wellness!

Managing pain before it manages me

It is 2 a.m.

I lay here writing because, yet again, I have been awakened by this pesky stomach pain that engulfs my abdomen. I think it is the 6th or 7th day in a row that I have woken with this not-so-friendly visitor, although this is the earliest. Yesterday my husband asked, "Is there any day since I have known you that something hasn't hurt?" The answer is probably not, but certainly not in the last two years. I can say with confidence that for almost 2 years I have had knock-you-on-your-ass head pain. In addition there is the not-so-much-fun cycles of stomach pain (abdominal head aches), neck pain, back pain, shoulder pain, tendon pain and hip pain....and let's not forget the nerve pain. Goodness, it's a lot really.

This is my process right now. I am in the process of accepting that this is really happening, it sucks and it doesn't seem to be going away. I hold hope that someday it will go away and I will live without pain, or certainly less pain. I would even settle for intermittent pain. This constant pain that is there all the freaking time is a drag to say the least. It wears out the adrenals, the mind and the spirit. 

I feel so much gratitude though, that for the moment I seem to be not running from the pain. Instead I have been guided to a wonderful therapist that specializes in pain management and chronic illness. In just two visits I can already feel my perspective changing. Even the small little changes make a difference. The pain doesn't go away, but my resistance and reaction seems a bit less. And really, anything that helps, even a tiny bit, is worth it right now. My pain level is almost always between 5-7 on a 1-10 scale and way too often is at the "stupid" level which I would guess is somewhere between 8-10. Ten being the extreme pain where it feels like I am passing a kidney stone or birthing a baby in the small space of my skull or I am in some wicked kind of torture chamber where an axe murderer is hacking into my brain. 

I spent a good period of time trying to ignore it, push through and tell myself this isn't so bad. Newsflash - it is "so bad." But, that doesn't mean there are not lifestyle changes and small shifts in my awareness that can make a difference. Like the good ol' remembering to breathe into the pain when it increases, and using my coping skills, and......blah blah blah. But, the reality with chronic illness/chronic pain is that making self care a priority in my life is just not optional. Wishing it wasn't happening or trying to ignore it or run away or minimize will do nothing but increase my suffering. It is happening. It sucks. And life goes on. 

That is the key. Pain is not optional currently for me, but suffering is optional. This is a phrase I have heard for some time, but it is finally resonating on a deeper level for me. Nothing that I am reading in my new book, "Managing Pain before it Manages You" by Margaret Caudill, is shocking to me. Instead, it is a series of thoughtful reminders and suggestions of how I can be introspective and mindful to ultimately manage this pain a bit better. 

The word 'manage' really seems to be the key. This word keeps popping up for me. Really it is all someone with chronic pain can do --- manage. I can see now that my efforts to beat it or run from it were valiant, but ultimately managing is the card that keeps coming up on top of the deck. And in this managing there is opportunity to regain some control of my life which has felt like it was careening down the tracks like an out of control train.  That out of control feeling then feeds so many old issues from my past that confound the problem. Add in emotional pain to the physical pain and there is really a recipe for disaster. The physical pain may not be optional, but the emotional pain is. 

I am in the process of learning to manage. I keep saying this because I tend to be all or nothing - a die hard perfectionist. Maybe if I keep reminding myself that this is a gentle process of becoming more alert and aware and not one more thing to do or achieve, that that perfectionist will settle down and not get her knickers in a knot. My life is the way it is right now. Pain has joined this party for way too long. It doesn't seem to be leaving no matter how nicely (or not so nicely) I ask. So, for now, it is about managing. Managing this pain before it manages me. 

Happy New Year

Happy New Year!

I have been laying in bed today recovering from a beautiful day at friend's New Year's party and reflecting on what this year can bring for me. Just maybe I can repeatedly surround myself with that which supports and nourishes me. And just maybe the myriad of symptoms will improve, including the hopelessness and feeling of "overwhelm" trying to figure out how to treat this disease and to figure out what helps. I have been witnessing the power of being present and letting myself feel supported. This support can be from the Universe through the amazing Goddess cards I have been working with, or a newly revitalized yoga practice, or letting friends help and support me, or just letting myself be held by someone that loves me. I can also support myself through my breath, through being calm and allowing myself to connect to what helps and through surrendering the fear and resistance just a bit.

Someone recently mentioned to me that my read my writings but not always as they were just wrenching. It's true, they are wrenching. This disease is just wrenching. More than words can express or anyone can really understand without experiencing it. But, what I have been seeing these last few weeks, is I must be gentle and connect to what helps -- repeatedly. Whether that is a walk in nature, lighting a candle and listening to sweet music, recognizing it is necessary to take strong medication to help a spike in a symptom,  or accepting that my neurological system is on overload and the kindest thing to do for myself and my family is to shut the door and go to bed.

This new year is not about resolutions or some big statement of what I will do to change or how I will beat this disease. I think it is about the subtle shifts in my relating to myself and the world that I have seen working at times these last few weeks. May this new year bring shifts in my healing (and in everyone's healing) and may I have the proper vision to see my role in how to dance with this disease and at the same time, be well. 

Vision adjustment - BREAKTHROUGH AND CELEBRATE

Awakened at 3:00 a.m. Feel the head pulsing. "Hello headache. It's been four hours since we saw each other. Can't say I missed you." Wondering why I can't go back to sleep. Lately I seem to have come out of the two month long die-off reaction/flare and have felt a little better. Have been able to sleep and function a bit more. I go to the computer and check Facebook and see, "Dawn of the Aquarian Age of Consciousness. Full Moon on December 28th." Oh, now it all makes sense. I know nothing about astrology, other than when "things are happening" my body reacts. I check to see what time the full moon is and I am not surprised that it is at 2:21a.m. No wonder I am up. Well, I can choose to resist or just flow with it. I choose the latter.

Yesterday was very interesting. Actually, the last week has been very interesting. It started with Winter Solstice eve spent at the beautiful and powerful Breitenbush Hot Springs and then a lovely ritual here in Eugene. I can't even put into words what happened for me, other than to say it was transformative. It felt like the beginning of a major vision adjustment. Since then I have felt much softer, much less resistance, more acceptance of what is in my life at the moment. The shift feels subtle and yet massive. I still don't feel well physically, although I am no longer vomiting or having to lay on the floor for a "rest" when moving from room to room, so that is an improvement. I also am no longer retching constantly and can actually move my body a bit for yoga or walking ....more improvements.

It is interesting how sensitive this body has become, to planets, to food, to environment, etc. Have had to completely give up dairy as I realized the stomach pain seemed to be worse with dairy products. Grateful to have seen that and still missing my goat cheese terribly! Attempted to go to the lovely new Unitarian Universalist Church for Christmas Eve service. I somehow blocked out the fact that the building was still in the process of a remodel. I did make it thirty minutes before my eyes were red, my head pain was off the charts and the retching was constant. I was sad to leave but had no choice. The interesting thing is these things haven't gotten me down nor have I spiralled into an endless dark loop downward of wondering what is next, etc. Instead I have been able to go with the flow of this body and nap when it needed to and abstain from what may make things worse (like a chlorinated hot tub....even though it had a front row seat view of the Pacific Ocean). Yesterday I even played the "home maker" role and cooked/baked and organized my spice cupboard. By evening the nausea, retching and head pain had me "grounded" on the living room floor, but I still feel grateful for the opportunity to "play" in the kitchen. It was awesome really.

I guess what I am getting at, is that I do feel a shift, a softening, even though the physical body seems to still be on a yo-yo roller coaster ride. I can't express how grateful I am for that. I am reconnecting to my body through gentle yoga, walking, and just listening. I feel less scared and more present. I feel ready for the day rather than scared of it, which is definitely an improvement considering I have slept very little and already feel the head pain/nausea increasing. The body is such a small part of who we are, yet it is so very easy to get so mixed up. It is a constant process of sifting and untangling from the body and the unconscious. I feel as if there has movement in these areas, hence the vision adjustment. I guess the timing is right, with the Solstice and the beginning of a New Year. I am ready. I thought 2011 was hard, and then 2012 did it's thing. I am ready for 2013 to bring a change in my health, but even more so in how I move and relate to it. I feel it happening. Thank you Universe.

I have been having an amazing experience over the last few weeks working with a deck of cards called Rainbow Warrior Awaken. They have been blowing my mind really. As a breathed in the last paragraph (as I thought I was done writing), I decided to draw a card as an intention of what is to come. RADIANCE. (Okay, that is awesome). "Beloved Rainbow Warrior, the message you are receiving when you draw the card of Radiance is...... you are now called upon to BREAKTHROUGH AND CELEBRATE!" Oh, okay. I can do that. Thank you.

The wall

Sitting at a crossroads, or up against a wall more like it, and yet again have no idea where to turn. The body and brain are so affected by the disease (again) that it feels impossible to navigate through these confusing murky waters to figure out what to do to help. It has been two months of an intense flare that appears to be getting worse. As I am awoken from restless sleep (again) by immense head pain,  I am clear that something has to change. Back to the drawing board. This new medicine (a homeopathic no less - which should be the most gentle and tolerable) must be working and causing the intense symptoms. The question becomes, do I hang in there and hope the body adjusts and learns to detox better or do I stop yet another medicine that I seem to not be handling? I wish I knew the answer. I wish I knew how to get better from this 18 year disease and 21 month re-lapse in the form of a crushing headache and all it's friends. I have, yet another, appointment with a local doc that knows little about Lyme hoping that he may offer some relief to this headache or some advice that provides a missing link to the puzzle. The familiar jitters of how to meet another doctor and explain a complicated medical history that sounds ridiculous. How can someone really have all these symptoms with no relief or pattern? Well, I can. That much I know. I wish I knew anything that would help. People keep saying, "I hope you feel better." I know they mean well. But really those words make me want to cry. The pain seems endless. No one seems to know how to help when I can't tolerate anything that is supposed to kill the bacteria that are ravaging my body. I know the basics: have faith, pray to a higher power, trust that this too shall pass, gratitude list, let go, accept, cope, allow help, etc. But, I ask genuinely....how to keep going for years on end when doing those things seems to help you get through the days with more ease, but the pain and other intolerable symptoms are relentless? The body is worn down. The next thought is, "You are more than the body." Okay, but how to live in it when the pain is intolerable and no treatment seems to be helping and there is no end in sight? "Everything changes," says my sweet Chinese medicine doc,"even the Berlin wall came down. Nobody thought that would ever happen." Great! He is comparing this never ending disease to the Berlin wall. I get his intention, but it feels as incomprehensible as the Berlin wall. I want this wall to come down...NOW...please. Please.

Changes in reality

Sitting here noticing that although I often fake it and make it, persevere to the point that most onlookers have no idea anything is wrong, this damn disease impacts me so much every freaking minute of every freaking day. The pain, the anxiety, the awkwardness, the changes in relationships, the_______ fill in the f*&%^*&%ing blank. There is so much there that is just really foreign that has snuck under the covers to infiltrate what is my day to day existence. What seemed so strange now feels like the norm. It's sucks. I look on the bright side, not dwell it in, blah blah blah...but sometimes the reality of how illness changes your life in difficult ways just stands there staring you in the face. Tonight is one of those nights.