Transformation (and the last entry of this blog)

After many uses of the delete key, it is crystal clear that this blog is ending. I'm not ticked off anymore. That is really something to celebrate. There is a lot of unwinding and healing still to come in the next twenty months (according to my horror-scope), and I am prepared to take the time and space to allow it to happen. My daughter thinks I may have been abducted by aliens. It's possible. If so, this new Faith model is much more pleasant so I think I'll keep her. She doesn't even yell and have emotional verbal diarrhea. Or at least she hasn't for two weeks. Definitely a record, and worth the effort to extend.

Maybe I should back up a bit and explain why it sounds like I stumbled upon a bottle of happy juice. Just a month ago I literally felt like I  had one foot in the grave. I was running in circles trying to figure out what to do, how to get well and who could save me. Ever other word seemed to be overwhelm. Doctors saying big scary things like "auto immune encephalitis" didn't help the insanity spiral. Somehow I was gifted with the opportunity to attend the Shan Ren Dao Retreat outside of Portland, OR.  I don't know how to explain the retreat without sounding like a lunatic (even more than usual). I can say this though, that it was completely transformative. Being there was truly the hardest thing I have ever entered into and definitely the most rewarding. I feel alive and ready to live my life. My body is no longer the enemy, but instead a trusted friend that doesn't lie and will give me clues to what it needs if I just remain open to hearing them. I told you if I started to talk about it you would think I was nuts. 

I really didn't just fall off the turnip truck and get a concussion. Something has changed. I feel different at a cellular level. Everyone keeps coming up to me, "You look good....different. Not sure what though." The head pain of 2.5 years has not vanished without a trace, but it is improving and lots of unpleasant symptoms (and medications) are gone. I am stronger, have energy and can cope with life in a way I think I never have before. I don't feel trapped in this body-mind-sense complex and sentenced to some torturous existence. There is a lot of light shining. 

Considering the challenges I came home to, that is impressive. My daughter and husband went through a major family crisis while I was gone. Much of their worry was how I would react and if they would be able to pick up the pieces after I exploded. Big surprise, I didn't explode, and have instead responded appropriately. How bout' that for shaking things up around the homestead? 

And then came the heavy heart home coming. A family I have grown to love and respect immensely were in the final stages of caring for their sweet 4 year old boy. He passed in their arms after a life filled with immense challenges and pain. I was honored to be with the family hours before he passed and hours after. My heart breaks in two for them as they move forward with their grief. But somehow, I was able to be there for them in a way I couldn't just a few weeks ago because of illness that had me basically bedridden. I wanted more than anything to just be able to support them and that happened. I am humbled and deeply honored. 

In some way this little boy passing was an end to eleven years of working with medically fragile children. This book in my life is over, at least for now. But with it goes the pattern of attachment to my illness. As much as I have given to being a nurse, I have also sunk deeper into identifying with Lyme disease and it's many companions. Both chapters ended suddenly along with the book. I have resigned from my job as a Early Childhood Special Education Nurse and will wait for the new chapter in my career to show itself. These final weeks at work feel like the epilogue. I know what is next will unfold in time. Waiting and trusting feels right which is far from my typical pattern. This definitely adds more fuel to the alien abduction theory.

Now I walk forward, feeling grounded and content with what is.  I am profoundly grateful for everyone who has supported me in countless ways. It is time for me to take responsibility for my life, and to step fully into what I have been gifted. I am going to heal completely. It is happening. 

Thank you.

Turning the page

I have reached an interesting point in my journey through illness. I think, on some level, I am learning to live in the present and accept what is. Releasing the pattern of mourning about the past or worrying about the future is a new dynamic. Making plans and being practical feels entirely different. Fear is dropping away to make room for moments of success, joy and relaxation.

I am about to leave for a two week healing retreat. I will turn 39 while there. A birthday in silence to reflect on the true meaning of this body walking around on this earth for some time. My family obligations and duties at my business and workplace will be left behind. No computer or telephone access. No problem solving, mediating or disciplining (I have a teenage daughter). Two weeks of being with myself and letting go of whatever is blocked in the body and resistant to healing.

The timing is perfect, since I seem to have an autoimmune issue in which the body is attacking itself causing swelling in my brain. The image of a mushy, angry, inflamed noggin is exactly how it feels. It is time to call a cease fire and lay down the weapons that are aimed at my head because frankly I am sick of it. Really sick of it.

That said, I am learning how to live in this body with all it's ailments, pain and unpredictability. Learning to not be afraid to turn the page in the book that is my life not knowing what will happen in the next chapter. This is progress. 

Roller coaster

I feel healthy.
The ride begins.....
I feel sick and don't know why.
I have Lyme and take the medicine.
Medicine doesn't work.
More tests and medicine.
I have Lyme and take the medicine.
It seems to help and symptoms decrease.
Medicine done, symptoms return.
I don't have Lyme and never did.
Symptoms flooding back.
No answers.
Ignored.
Belittled.
Sicker.
And sicker.
Anxiety, pain, fatigue, and more pain....
Fibromylagia.
Anxiety, depression, mood swings, PTSD.
Supraventricular tachycardia
Chronic fatigue.
Adrenal fatigue.
Intractable headache.
Chronic Lyme.
Tests.
Treatments.
Much sicker.
Joint pain.
Retching.
Memory/cognitive decline.
Sweats.
Vertigo.
Vomiting.
Even sicker.
More tests.
Chronic migraine.
Autoimmune Encephalitis.
Not Chronic Lyme.
Hospitalize.
No.
Stop current medicine.
Stay on current medicine.
Chronic Lyme.
And more tests.
Not Autoimmune Encephalitis.
MS.
Lupus.
Arthritis.
Autoimmune Encephalitis.
Autoimmune something.
More treatment ideas.
More tests.
And the ride continues.......

A Window Inside

I look both ways to cross the road. Feeling scared to journey forward to familiar, yet new and scary land. There are remembrances of what it was like before, but this will be different. Holding optimism tightly is more of a challenge as the visceral feeling of bacteria dying and the body trying to cleanse them is surfacing again. The body aches and burns. The stomach churns and without notice pains so intense radiate to the back and engulf. Internal temperature fluctuates up and down from the freezer to the frying pan. Fog in the brain is like pea soup and finding words is reminiscent of a word search puzzle. The head keeps screaming, ranging from a loud inside voice to what feels like aliens trying to escape, but being trapped in the pressurized brain. The ground moves without warning. The mind swirls and anxiety waxes and wanes. Sleep becomes a distant memory and energy fades. Add in a sleep deprived EEG to the mix and instantly a not-so-fun filled haunted house is made. The beautiful part is, delirium has overtaken the body-mind-sense complex and made today nothing but a memory. Thankfully, tomorrow will be here soon.

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. 

Seeing the deeper messages

Some days the pain is so bad that all I can do is writhe in the bed, cry and pray for some relief or that I will somehow pass out and wake up in a little less pain. If you asked me at one of those times what this pain and illness has taught me I would either completely ignore you or possibly launch something at your head. That said, when I get a little perspective - either from a reduction in pain or these days, it is more likely that I am doped up on pain medication - I can see that the opportunities for seeing the lessons in illness are infinite. My spiritual teacher recently offered the idea that maybe my husbands GI bleed and needing a blood transfusion were an opportunity to let go and to try looking at the world with fresh eyes. What if this is true? What if, living in immense pain is an opportunity to see that I am so much more, so much greater than this pain? What if, this is the way that I will learn to not identify so much with the body-mind-sense complex, and see that I am really this limitless, beautiful being that is unaffected by pain? Intellectually I can see this so clearly. When I am writhing in pain, feeling as if I am passing a kidney stone in my head, it is a bit more difficult. But, I can see the importance in looking deeper into what the message may indeed be. I know that "medicine" many years ago, especially in indigenous tribes, was more about finding the lessons and going with that flow, than finding the perfect treatment. The flow doesn't always feel good or go remotely as we would like it to, but I believe the flow is that perfection, call it God or Ishvara or the Universe or whatever you may, but it is something that is all pervasive and beautiful. I am given the opportunity every day to remember that I am not just this body, but something much greater. Now, that is something to be grateful for. 

Thanksgiving - time to sift through the challenges and find the gratitude

Today is Thanksgiving. Throughout the country, families are waking up and beginning to prepare an elaborate feast, gather with friends and family and take stock in all they have to be thankful for. It has always been a favorite holiday of mine, steeped in family tradition. Last night I called my mother and reminisced about Thanksgiving spent growing up on the island and on the farm. I even pulled out my list of what I am thankful for that I wrote in 1982, complete with phonetic spelling. We were very poor and living in a simple shack, which the list really reflected. "I am thankfull for electrisade. I am thankfull for a full freezer. I am thankfull for the wood pile." That list always helps me, especially when life is throwing me some intense curve balls, which happens to be the state of affairs currently. When chronically/severely ill, in unrelenting pain for what feels like an eternity and in/out of crisis often, it is easy to get caught in what appears to be lacking. Somehow reading that list always magically humbles me and brings me to my knees. No matter how big the challenges, there is always something to be thankful for. When the heart opens in gratitude, magic happens. The resistance and negativity starts to melt and transform. Last night this happened beautifully. I have been in a spell of terrible pain and family crisis with my husband being ill and needing a blood transfusion. Yesterday afternoon I felt very sad to not have the energy to participate in preparing for Thanksgiving and being bummed by the changes this year. No trip to the coast for a family retreat for the first time in years. My daughter is going away for the weekend with her girlfriend's family. My husband is exhausted and not really interested in socializing or the whole Thanksgiving ritual this year. And me, I laid on the couch in pain, wondering when all of this would change for the better. I didn't feel very thankful at all. But then, somehow the universe intervened. My teenage daughter was cheerful (something to be very thankful for) and seemed to change the mood upon her return from dance class. I got inspired to order a Thanksgiving feast take out from our favorite vegan restaurant so we could all share a meal together before my daughter left in the morning. My husband started talking about what he always had for Thanksgiving meals growing up and that lead to me calling my mom and reminiscing. Then the list got unearthed from a large pile of keepsakes and the magic happened. I could not but see the multitude of gifts in my life that I have to be thankful for. The pain and feelings of being overwhelmed seemed to immediately take a back seat to all the gratitude that fills my heart. Yes, I may be sick with this awful disease that nobody seems to have an answer for...okay, that is true. But, I am blessed to be consistently given (although not always predictably) the means to afford some kind of treatment and the access to it. I have the most supportive and loving friends, family and co-workers. I never lack for housing or clothes or food or medicine or clean water. I have a thriving business, a patient and loving spiritual community and a workplace that consistently proves to me that human beings are amazingly strong and compassionate creatures. So, this Thanksgiving may be different than years past, and there may be lots of challenges that are uncomfortable, but there is no denying that I am filled with gratitude for the endless blessings in my life. Happy Thanksgiving!

I don't wanna

I think it is appropriate to post a bit of a disclaimer. This post isn't going to be sugar coated with humor or some positive message that I am trying to talk myself into. I just can't muster it at the moment. Sure, there is positive in my life, lots of it. For that I am grateful. But really, sometimes I think one just needs to let it out and now is the time for me.

I am so freaking tired of this journey. I am tired of Lyme Disease and whatever co-infections, autoimmune diseases, mold and chemical sensitivities, etc. that go along with it. I am tired of PTSD and it's not-so-pretty manifestations. I don't want to wake up with the symptom of the day, cry in the car before and after home visits at work because I am so tired. I don't want to fake it and make it. I don't want to have infections I can't get rid of or pain that is so familiar that I talk to it when it returns after a brief exodus. I don't want to worry about nutrition and what I should or shouldn't be eating. I don't want to startle so badly that it takes hours to recover and realize that I am safe. I don't want to keep searching for answers or accept the very uncomfortable and unpredictable present. I don't want to miss my 20 year high school reunion. I don't want to nearly pass out from a short walk or bike ride. I don't want to feel this lost and floundering.

I just want off this sorry-go-round.

Okay, deep breath. Time to slow down the pity party.

No matter how much I want off this ride that is my life, I don't get to hop off. Just like everyone has their intense challenges and they have to keep going. I have to keep going. Gosh I want it to be different. I want to feel good and lay on a beach and swim in the ocean and laugh with old friends. Oh, I want to do that. But just like my mama always said, "You don't always get what you want. You are old enough for your wants not to hurt ya." Well darn it.

A glimpse of today

I don't have anything witty or profound to say today. No big revelations or point to this post. Today I am happy and sad at the same time. Really guys, I am tired of being sick. I am tired of trying to live life, stay positive, enjoy and accept what is while being so sick. I am really tired of it.

Today went like this.

Woke up relieved and sad that I had found homes for two of my beloved kitties. Found homes for them because I just can't take care of everything I used to -- have to simplify life a bit. Had very little energy and was late doing my morning prayer ritual. Tried to juggle finishing my morning puja and tending to cat kennel customers (my business) at the same time. Then it was time to "check off the list" before going on a play-hooky-from-work-day-time-date with my husband.

Take meds, check. Scoop dog poop, check. Pick zucchini that I should have picked days ago, check. Find warm clothes, check. Eat something, check. Call customers, check. Want to cry and go back to bed because I am too tired to go on.....ignore. Instead, laugh with my husband, smile, get the car an oil change that is 7,000 miles late and finally head to the coast. Sleep the whole way because it was either that or pass out or cry. Nightmare dream about my daughter and her dramas with school bullies that keep tormenting her in the community. Wake up at the coast. Eat lunch. Walk on the beautiful beach and take a nap in the sun with my sweet, sweet husband. Barely make it up the steps to get to the car because the hips don't want to work. Use the bathroom a million times because the bladder is retaining urine and not emptying. Crawl back into the car and fall back asleep because everything hurts so badly. Wake up as we arrive at home.

No more energy. Check email and Facebook. Text some friends. Try to find a home for sweet, old shit eating neurotic dog. Lay in the bed with a crushing headache watching a lovely movie with my sweet husband. Attempt to get up to cook something and end up in bed before even starting. Sweet husband is steaming the zucchini. Bless him. Try to ignore the fact that I feel so stinking ill and that I am so bloody tired of feeling this way.....

The order

Why do really terrible things happen to really wonderful people? I have been chewing on this thought today in so many contexts. My dear "cyber Lymies" that are going through their own physical pain and tremendous loss at the same time. A dear friend's kids who lost their father way too young. Too many women and men that are assaulted and abused. Children born with tremendous challenges and medical conditions. Wonderful, strong people fighting cancer. Innocent victims shot while watching a movie. And the list goes on..... Including the Lymie tribe that I have gotten to know scattered throughout the world.

How do you make sense of what is happening in our bodies, in our family, in our community and in the world? For me, the words flowed today, when responding to yet another unthinkable story in cyber-land-- the sudden death of youth, and it took me back to a moment in my life that was so profound and truly changed how I looked at the world and the order, the cosmic flow of life.

"There are no words to explain the grief of losing a child and certainly no explanations. "Everything happens for a reason" also doesn't help in such tragic loss. I feel compelled to share this in hopes that it may help just a little. When I was in nursing school I worked at a nursing home on a wing with young children that were all on ventilators, with trachs and needed 24 hour care. That same summer I contracted Lyme disease (1995) and then spent the following Spring doing my internship on a Children's Bone Marrow Transplant/Oncology unit. I saw parents losing their children on a regular basis. It was then when a strong understanding came to me, not based on any religion, but really the only way I could go on doing my job without losing my mind. How could I explain that some 90 year old abusive s.o.b lives to be so old and a young child dies at six having lived such a short painful life? Something came to me one night as I stood in the room of a 9 year old after he had left his body. I could feel the spirit had left and there was just flesh and bones remaining. That night I was comforted by the feeling that there must be some plan, some amount of time or karma or life experience that is to occur in this life and when it is done, then it is time to go. And often in that going there is other karma, life experience that happens to the people around that is needed as well. For me this was the only thought pattern that helped. It soothed the need to find a logical reason, because watching young people become disabled or die just doesn't make sense. After that night I was somehow able to approach my life and my work and my own loss in a different way. I still have the emotions, the feelings, the grief when the situation dictates it (like in tragic loss of a youth), but I take comfort in knowing that there must me some plan that I am just unaware of. I have gone on to work with medically fragile pre-school children that are profoundly ill and die young. Their parents have to cherish every painful moment with their children as they know there may not be many. Again, if I try to find a "reason" for it I will drive myself crazy as will the parents. For me, it is just happens the way it happens. There must be a greater order driving how things are.  For me, that brings a little comfort in absolutely heart breaking times."

Life as it is

Life can be really hard. I can make a list of all the symptoms that I have and another list of all the challenges that I face or have recently faced. And yet another list of all the challenges my family faces. I can justify us all to be extremely angry and depressed. It would be completely just, but what good would that do?

What good does it do to prove that I am right? The doctors that didn't diagnose me for 16 years were wrong. The people that have hurt my family are wrong. My family members could make better choices to take care of themselves and make their lives smoother.  I am in so much pain and have to force myself to work and pay the bills rather than get government assistance that I likely won't qualify for while we pay way too much money for insurance that doesn't cover much. What good does it do to lament and string a mala of discontent? None.

We all hear the one liners throughout our lives about looking on the bright side, cup half-full, think positive...blah blah blah. But, really, when the shit hits the fan in your life it is the only thing to do. It really doesn't help to justify your misery about all the woes in your life. Trust me...I have tried.

What helps? Well, I think just accepting what is and doing what is to be done to help when there is something that will help. And let go. And forgive. And smile. And laugh. And enjoy as best you can, through the pain and the challenges again and again. It is how it is. I don't know why this is the way it is, but I can't change it. Resistance is futile. I can accept and live fully or resist and be miserable. I think I will choose the former cause' the fruits are a little easier to swallow.

Walls

"Hit the wall, " a violent metaphor that I try not to use. It's common usuage though makes it a perfect example.  I have been watching the Olympic trials lately and have heard the phrase referred to again and again. When the athlete "hits the wall" they must dig deep into their reserves to keep moving forward or succomb to physical collapse. I can really relate to this.

Maybe instead of the oh-so-violent "hitting" I will say "met the wall" instead. Meeting the wall is a common occurence for anyone who is chronically ill. For me, that wall has been too close recently in that I feel as if it is there all the time. I can count the cracks and crevices on the wall and would prefer it to go away. I could push against it, whine and complain. I know it won't change a thing though, cause' it's a wall. It is what is.

The body is part of the greater order of things. Why is it in so much pain and so weak? That is the million dollar question to which there is no answer. When we follow the answer back to the source -- it just is. I can fight it or accept it. Two choices. That doesn't mean give up. Do what needs to be done to help. But, if the wall is there I can meet it and greet it or hit it and fall down. I can dig deep into those inner resources like the athletes do in hopes that I can push forward. This doesn't always work though because in chronic illness the body is so depleted. Sometimes the answer that comes when I dig is, "The account is empty. You are now borrowing on credit."

I think I am learning to manage the walls. Greet them, meet them, accept them more. This doesn't mean I am not tired of them. I am so freaking tired of managing them - the utter exhaustion and fatigue from a myriad of symptoms. But, I can see that "hitting them" or falling to the floor in tears at the sight of yet another wall is just not an option.

Meet and greet with as much of a smile as I can muster....all I can do right now.

Pain does not equal suffering

So much swirling in the head that "should" be documented. The successful fundraising event, the outreach, the Lyme disease awareness raising, etc. etc. But, due to the nature of this disease the thoughts are not coming together. The head pain has taken center stage again along with it's companions -- gaggy retchy, joint and back pain and stomach pain. They seem to be doing all the talking.

The good news is I did muster up the energy to have a talk with all these characters. I laid down the rules. They seem to not be listening to the "do not enter signs" posted everywhere, but they must listen to this sign. NO AMOUNT OF PAIN IS GOING TO CAUSE ME SUFFERING ANYMORE!  I can enjoy my life while in pain until it is not there anymore. If that means spending a lot of time "not being productive," then so be it. Maybe the main bit of productivity for me these days is to stay relatively cheerful and not let all these "pains" get me down. Having a headache for 15 months is something, by some twisted logic, I have learned to live with. But, when the pain is so bad that I can't stop retching or open my eyes or even move without tears....well, then is hard to stay cheerful. Somehow yesterday and today I did it. I managed to even leave the house and do things (for a short time) that I wanted to do. This included going to the Olympic Trials and seeing Asthon Eaton (who broke the world record in the Decathlon yesterday) up close and personal! Afterwards, I laid in bed and passed out (literally) from the pain, but it was worth it. It's all about choices.

I keep hearing from doctors, "You've had this for 17 years so there is a lot of neurological damage. Headaches are one of the hardest Lyme symptoms to get rid of. I will do my best but it will take time." Well, I think that means I have only one choice left. I must learn to live my life with ridiculous amounts of pain. (I've had pain for 17 years but NOTHING like this RAGING head pain). I think this last 15 months I have been so focused on it going away and staying away, that every time it returns I allow the emotional suffering and disappointment to enter with it. And along with the suffering comes this old feeling of being attacked and out of control. Hence the spiral downward when the pain increases or becomes severe without any warning.

Enough of that crap! I can still pray to heal completely and believe it will happen WHILE accepting that for now, I need to learn to live in pain. It's temporary. When it's not there that is fantastic. When it is there, oh well. I managed to do this for two days in a row and for that I am grateful. If I wake up and there is no pain...excellent! And if not...well, there is always day three of learning to live happy and in pain....

Coming out: Lyme Benefit on Sunday, June 10th at 6:30 at COZMIC

Coming out. In this culture the phrase "coming out" typically means declaring your sexuality to your family and community. I just realized that this phrase has it's own meaning when talking about illness. We all know the stages of acceptance, the grieving process....blah blah blah. I think I want to add the "coming out" stage.

I thought my "coming out" was when I became visibly very ill in the Spring 2011 and had to disclose to my community how ill I was. This led to so much support in many ways that I am eternally grateful for. It also took away my mask of anonymity. As hard as this is (and trust me it is hard), it has opened doors of healing and support I never thought possible.

One such door is about to be blown off the hinges and the next phase of "coming out" will commence. My sweet friend/co-worker Wendy has organized an amazing benefit night for me next Sunday. For me? Really? These thoughts swirl through the head at varying pitches of amazement. Honestly, it couldn't come at a better time on many levels.

The bank account (once again) is bleeding heavily. Somehow though, through this whole process, when one door closes another opens. When I run out of money and have no idea how I will pay the medical bills, then money appears. I am learning, again and again, that I have to trust the universe to provide what is needed.

What is also needed right now is for me to feel encouraged and hopeful. I had been feeling a little better since going to Portland every two weeks to see the traditional Chinese medicine doctor. I started to attach to this "feeling stronger," which was why when the Lyme flared (again) in the last few weeks I felt as if someone had punched me and I couldn't catch my breath. Discouraged is the understatement of the year. It is so easy with this disease to get discouraged. Healing isn't remotely linear or gradual and everything is completely unpredictable. But, somehow I am still moving forward through the ridiculous amount of head and body pain and the myriad of symptoms that just can't seem to get the memo to get lost.
 
My motivation for writing this post was to get my thoughts together before the benefit next week. I want to somehow be able to speak with some degree of knowledge and coherency about a disease and treatment that is ridiculously complicated and convoluted. Somehow my brain, that is ravaged by this f*&^*^ing disease, needs to put together coherent thoughts that make sense and can convey what I have been through and impart resources to others that are seeking diagnosis/treatment. Oh, this is where I pray to the higher power and ask the universe to provide. Just a minute. Okay....did that (for the hundredth time). It better work this time because on Wednesday I really "come out." Wendy scheduled an interview at the local public radio station (KLCC, 89.7) at 1:00. Holy crap! (breathing, breathing, breathing).

Hopefully the words that should be articulately conveyed will enter into the head. I do want the fundraiser to be successful, because honestly I do really need help with the medical expenses. But, what I want more than anything is to help raise awareness about Lyme Disease. I have been sick for 17 years. This disease has engulfed my body and my life. It didn't have to. I could have been treated properly when I was originally diagnosed in the Spring of 1995. I wasn't treated properly because I didn't know what to fight for. I didn't know that the doctors were not informed or were mis-informed. I didn't know that the quality of my life was at stake. I didn't know the amount of havoc this disease would cause to me and my family. If I had a clue, a window into the future, I would have fought harder to find treatment. But, I didn't know.

That is what this "coming out" is really about now. If by talking on the radio, standing in front of hundreds of people on Sunday at COZMIC, and taking off all my masks that remain.....if that helps one person to not suffer from Lyme disease that it is worth it. It is so worth it.

Here are links to more information about Lyme Disease:

For general information about Lyme Disease, here are some links:
http://www.ilads.org/
http://www.lymediseaseassociation.org/ (will have their brochures
available at the benefit)
http://underourskin.com/ (fantastic documentary. Available on Netflix
and other online sources. We will show the trailer for this movie at the
benefit).

The press release that I received from Wendy. Feel free to copy and send to your friends/community.

On Sunday, June 10th beginning at 6:30 pm at COZMIC there will be
a benefit show for Faith LaCross.  Faith contracted Lyme Disease 17
years ago, but was just diagnosed one year ago and began treatment.
Most of her medical
expenses are not covered by insurance.

Entertainment at the event will include the Eugene Bhangra Dance
Group, acoustic guitar by Will Brown (all original songs) and a guitar
and vocal set by Julia Damon.  All are local Eugene performers.

In addition to musical entertainment, the show will include a short
presentation about Lyme Disease (yes, you can contract it on the west
coast!) as well as a raffle of local original art pieces and various
healing arts gift certificate baskets.  Raffle tickets are $2 each or 6
for $10.

Tickets for the show are $8-$20, with a family price of $15 and are
sold at the door.

We hope to see YOU on June 10th, beginning at 6:30 p.m. AT COZMIC, 199
WEST 8TH AVENUE.