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.

Learning to listen

Listening to music is simple. Choosing not to listen when someone is talking and you don't want to hear what they have to say, also simple. But having to listen to your body and know what it is trying to tell you, not simple. The messages seem cryptic and confusing with hidden paths and potholes.

When living with illness, the balance between being functional and completely crashing is so delicate. One is always picking and choosing, weighing all options and trying to discern who is talking. Is it that inner knowing that says to rest or even to get up? Or is it that desire that really wants to be fulfilled but would be detrimental to that ever-so-delicate balance you are trying to maintain?

I gotta say I am getting weary from trying to figure out who is talking. And, unfortunately, the consequences are so high why I don't hear what is really being said. Thankfully, tonight the voice of reason screamed loud enough (multiple times) and somehow I resisted going on a walk (three times) when really I was too tired to do so. Bummer. It was pretty outside, the air smelled nice and I am blessed to not be suffering with allergies. But, I listened. It will be nice tomorrow and hopefully the fatigue will have lessened enough that I can get out and enjoy the beauty.

And tomorrow, yet again, I will need to unclog my ears and listen. Really listen.

Roller coaster

I feel as if I have been tumbled about on a roller coaster ride these last few weeks. Would rather not relive the trials and tribulations. Somehow though I want to capture the essence in a short manner. Doing anything small has never been my forte. I will give it an honest effort.

I am getting stronger. Can't deny that. The treatment (traditional Chinese herbal medicine, Chinese/Japanese traditional treatments, supplements and vitamins, thyroid and immune support medication, saunas, detox baths, walks, massage, counseling, clean diet, rest alternating with activity, etc. etc.) seems to be moving me in the right direction. For that I am very grateful. So many symptoms are calming down. But somehow, the gradual calming of the ever-so-familiar symptoms is making room for new, or even very old symptoms/patterns, to show themselves. I should probably be grateful for this too. I must say opening that gratitude jar is a lot more challenging.

Any illness, any chronic long-term journey towards wellness, really brings forth all that needs healing. This is happening in a MAJOR way in my life. I gotta say it is super tough. Trying to focus on all the positive (go to in a pinch) cliches. Everything happens for a reason. God only gives us what we can handle. Blah blah blah. It is how it is. It is all part of the order. I try to make these sentences drown out the, "Seriously this is happening to me! WHY? I've had enough!" The later battle cry doesn't help anything. Everything that is happening is happening because for some reason it is supposed to. I must listen to the subtle messages and move forward in this time of healing in whatever way necessary. (Remind me of that next I am whining and screaming to make this scary roller coaster ride stop!).

Trust

It has been almost a month since I have written. I feel all jumbled just trying to think about how to summarize. There is no way to succinctly say what has been happening or how I have been feeling. Maybe there is no need to say it either. What is wanting to come out right now is the issue of trust.

We all have trust issues. We are born helpless as babies and have to trust completely that our caregivers will do what is best for us. Sometimes this happens and sometimes it doesn't. As I told my daughter recently when she was complaining about some of her friend's parents, "As parents, we all do our best based on the circumstances and the background. Sometimes our best is pretty shitty, but it is the best we can do at that time." We as children grow up with all this baggage. Then, as adults when we are ready to deal with it, strong enough to handle what is inside the suitcases, it is as if they start unpacking themselves.

Now, toss in chronic or severe illness into the mix and well, there is quite a party to be had. When we are sick physically, mentally and emotionally those reserves to handle the baggage that starts unpacking are greatly reduced or depleted. Life goes on as we struggle to deal with what has seemed so basic. Tasks like getting out of bed, bathing and getting dressed now take more energy than sometimes is there. The day is spent trying to manage the myriad of symptoms and to stay as positive as possible. We have to trust that everything will be okay.

There is the million dollar word. Trust. We must have faith and trust that our bodies will heal. That our friends, family, co-workers, bosses, spiritual community, etc. will understand that we are ill and doing the best we can. We have to trust that someday this will be better. Sometimes we are vulnerable, very vulnerable. Many of us have varying degrees of long-standing trust issues from childhood traumas or abuse. On some level we can't trust our minds or bodies when sick because they are so unpredictable. It gets even more complicated and painful when people around us use this time of vulnerability to break that trust. It is a delicate time. A time to foster trust and faith.

I have been contemplating this a lot lately. I know this is a huge issue for me, and likely for many others. How to really trust when so sick and vulnerable? I can't say I know the answer. What I can say is that I am trying. I am sad that people use this time of vulnerability to purposely break that trust. I guess that is human nature. We are given free will and sometimes, for reasons unknown, people use that free will to go against proper values and what is correct. But life goes on. We keep growing and healing and building/re-building this trust muscle. We do the best we can to trust and have faith that all is and will be well.

Healing instead of fighting

I am noticing the subtle effects of words and actions. Often we see the direct effect of words but not the myriad of changes that happen underneath the surface. Let's take the common phrase "fighting Lyme disease." I have said this many times and even accepted a tag on facebook making this my job. I was looking at the title just a few moments ago when my feelings around this became clear.

The word "fight" implies a lot. First of all, I have to be the one fighting, there is something or someone to fight against, there will be a winner and a loser and there will be casualties from the war. Hmmm. I don't think I want to do that in my body. I am a deeply spiritual being and don't for a second see myself as the doer. So, out goes the notion of me "fighting." I of course want to thrive as a winner, but the bacteria thinks itself to be apart of my body. So does that make me the loser too? Double hmmm. Any time there is a fight there are causalities or at least some sort of fall out. I want to be well. I don't want to damage myself in the process. Okay, no more hmmm-ing. This is pretty clear. There will be no fighting.

If there is no fighting Lyme disease how will I be well? Can I be well without "beating this" or "winning." Again, these phrases are implying "us and them' and that there will be winners and losers. Maybe there is a way that I can walk towards wellness. Maybe there is a way I can heal and make it so all these uninvited bacteria guests will decide living in this body called Faith isn't really the best place to be. Maybe there is a way I can inspire my own immune system to create balance and dissipate what need not be there while encouraging what needs to be there to be present and flourish.

I want to heal and be well. I don't need to win or beat anything. I don't want to "have Lyme disease" or have it encompass my thoughts day after day. I just want to thrive, to live without ridiculous amounts of pain and be able to participate in my life. I want to not be at battle with myself or feel as if there is a battle being waged inside me to which I have no say in the matter. I just want to heal and be well. Really praying now is the time.

Anniversary

I awake today with thoughts swirling in my head. Today is "the day" that a year ago my life dramatically changed. I remember it so clearly. After sitting at the computer for hours doing some medicaid billing for work I got up and felt as if someone had punched me in the eyes. It hurt a lot and it felt like nothing I had experienced before. Well, that is not totally true. I think that a few weeks prior it had happened for a short time and then went away. I thought it strange but then quickly moved on. This time was different though, it was unrelenting. I did EVERYTHING from ignoring it, to working on the "emotional reasons" to why this could have happened (what was I afraid to see or what wasn't I seeing or what was I supposed to see?). I ignored it, I rested my eyes, I went to the eye doctor. And yet, the "punched in the eyes" feeling continued. On the fifth day it shifted. Little did I know that a year later I would still recognize this not so dear friend, Mr. Headache. The headache that has at times engulfed my life came and has not left. I have had a few headache free weeks but basically have had a headache for a YEAR. Okay, that is ridiculous!

When I talk to you and laugh and giggle, do I still have a headache? Yup. Usually somewhere between a 4-6 on a 1-10 scale. When it gets higher than that you can tell how sick I feel. My tolerance for pain has skyrocketed. What I can live with, function with, and take as a "good day" is, well, outrageous! I know many people in this world live in excruciating pain every day. Hats off to them -- really. It is beyond difficult to interact in this world when doing it through a veil of pain. Please remember this when someone seems spacey or crabby or just not-so-nice. Maybe they are living with pain that you just don't see. This is a dear lesson that I will never forget.

Wow, there are just so many thoughts rambling through this head of mine! I could just babble on for hours. I will attempt to wrangle in some of these thoughts into cohesive concepts. Okay, what is my point? My point is to say that over a year ago I was a woman with health issues but basically I functioned, most of the time, without you knowing about it. Since then, my health and my life has become an open book for the world to see. The eye pain and then headache became so severe that it was impossible to hide it. The series of events that occurred due to this transparency have been amazing!

In the following months I opened up at work and was showered by support, love and financial contributions. I experienced so many ups and downs with the medical community while trying to seek out a diagnosis for (at the time) for a massive 2 month headache. I started to reach out to my community, through facebook, since I was mostly bed-ridden and was touched by the support I received back. I discovered, through facebook, how helpful it was to be to write about what was happening and to have others read it and respond. I had no idea at the time how much this (facebook ranting and this blog) would become a part of my life and my healing. Eventually I found online support groups that have really become family. They have helped and supported me and given me an opportunity to connect with and support others like me.

When I think back to where I was before March 21st of 2011, the most glaring change is that I had no idea what was wrong with me. My health had slowly declined over 17 years with many diagnoses along the way, but there was no link to stop the decline. I just kept coping as best I could and dealing with various symptoms as they arose. But, when this headache came there was no turning back. Life became too painful and I had to find out what was happening. By grace alone, I was led to a doctor who was an angel for me. He diagnosed me with late stage (chronic) Lyme Disease. We started on a journey together discovering the nuances of Lyme and how to treat it. We stumbled - oh did we stumble - but we kept going.

I kept going, my family kept going, through seemingly insurmountable difficulties at times. The lows were lower than we ever could have imagined, and yet we survived. It was harder on me and my family than I will EVER be able to put into words. I have tried, but trust me, they are completely inadequate! The physical and emotional pain have been off the charts. But, somehow we have survived and continue to grab those f-ing boot straps and keep moving forward.

I have watched my community support me in ways I never would have imagined. I have also seen friends fall away or become awkward in their communication towards me. I know it is difficult to be around someone that is always sick. But trust me, as difficult as it is, it is much harder to be always sick! I have been blessed beyond measure by an incredible spiritual teacher who has supported me more than I ever could have imagined. Really I could go on forever about my family, my friends, my co-workers, my spiritual community. It has been breathtaking to watch. This is still an intensely lonely journey, but having you along with me has been beautiful. Having met people on-line with little to no support through this process, I am humbled and forever grateful to everyone that has helped me through this last year! I thank you.

I also thank you for coming along with me on this journey. I have openly shared - more than I ever thought possible - the nuances of this journey. It was spontaneous and never calculated. Why? Hmmm, really I am not sure. I think partly it has been a way of healing for me and partly a way to share with the world what it is really like to be sick with Lyme disease. There have been brave warriors go before me and share about cancer, but few in this community know what Lyme disease looks like. Now hopefully a few more people know. If that leads to a smidgen more of compassion and understanding to those that are ill --- well then, mission accomplished.

I know I am writing a lot. Be patient...I am almost done! Perfect word choice. Done. Those four letters have taken on many meanings the last few weeks. This treatment over the last year has been slower, more complicated, more expensive and more painful than I ever could have imagined. Just two weeks ago I had a severe increase in my symptoms and quite possibly had the worst head pain (and other symptoms that come along for the ride) of my life. The next week I found out that my beloved doctor was moving to Seattle. I felt as if my house of very fragile cards was tumbling down. I wanted to be done. Done with treatment, done with being sick and done with having to find doctors/practitioners to help me.

This being "done" has led to many shifts in my healing. I will write about this more in the coming weeks. For now I will just say that everything seems to be cosmically lining up. Doors are flying open. There are choices to make. I pray the guidance will come and the choices in treatment will be clear. I am done. Done with this chapter. Year one - over. What's up next? Really I have no idea. I do know I can't repeat the physical and emotional pain of this last year. It is time for a dramatic change. Gentleness is the word that keeps showing up. Gentleness in my healing. I have been at war with my body. My body is done with that. I am done with that. Time to shift and work together a bit more ---- gently. I amazed at how it is all lining up and pray that this continues.

What will continue is my amazement and gratitude for this last year. As difficult as it has been, as dark and painful and frightening -- I am grateful. With gratitude, I intentionally and deliberately close that door, end this chapter today. Today I open a new chapter of gentle healing. This is the year I will get healthy. I know it. Happy Anniversary.

Crossroads

I am definitely at a crossroads once again in my life. It is time to look all around and with caution, transition towards what lies ahead. This is not an easy time but it is full of hope. This time I choose to not be overly fearful and to trust that what is needed will be shown to me. I really feel I have no choice. When I let the fear overtake I just end up in a ditch. The goal now is to see this crossroads as a blessing that will unfold into the next chapter.

What chapter is ending? Year one of diagnosis and treatment (operation get Faith stronger and bomb the little buggers) is coming to a close. I can't help but wish the "crushing headache" chapter was closing, but it is not to be (yet). I don't regret the treatment choices but I can see that my body is not tolerating the "bomb them" approach very well. I react intensely to even the smallest amount of herbal anti-microbial or antibiotic. I can't deny that I have gotten stronger, but I am still so very sick and seem to crash so very easily. I have grown weary of this yo-yo routine.

My naturopath and psychiatrist (both Lyme literate) are moving in May/June. Initial utter panic and despair is starting to ease. Now I am seeing more clearly. Doors are already starting to open. But which to choose? Hmmm, that is still not clear. There is not an obvious naturopath either locally or in Oregon that feels quite right.  I am praying that too will become more evident with time. For now what is crystal clear is I have to trust myself to move slowly forward and to really listen to that wisdom that is guiding me.

I am feeling drawn again to my roots - the plant world and the many allies that are there. This morning I was spending time looking into Teasel, Byron White and Cowden Protocols and the Chinese medicine approach. I feel drawn to all of them in one way or another, but which direction to go is not  clear. (The Chinese medicine path is feeling very inviting though.)

So what next? Just wait for the traffic to ease and which way to turn at the crossroads will be evident. Breathe and wait. Trust my body. We have come this far and will be lead in the next direction. With caution my body shakes and my breath quickens as I begin to step into the next chapter....

I hate you Lyme

I have been looking for the "right" words to write in a blog post for days but they haven't come. How do I describe the pain and frustration that I am feeling? It has felt impossible. Almost 17 years of illness and a year since this major relapse and subsequent diagnosis. I thought I would be on the road to recovery by now. I had no idea how slow and incredibly painful this process would be. I am grateful for all that I have learned and the beautiful support systems that have developed along the way. But, what I really am is PISSED OFF. I want to be done with this f-ing disease. I want to be done now.

Yesterday a fellow Lymie posted this in a group. I love it so much I have read it a dozen times. She perfectly articulated what I have been unable to say. So, here goes:

“I feel like going on a rant. And you, my lucky friends, get to be my audience. I am tired of fighting every day. I am sick of the fact that tiny little invaders are in my body altering every possible system. I tired of taking antibiotics, probiotics, herbal supplements, detoxing treatments and watching every single thing I put into my mouth cuz, it may interact w/ all the previous things or feed the little f-ing 'critters' that have forever changed my life. My world revolves around Lyme. Not my family, the way it should be, but this f-ing disease. I hate Lyme and all associated co-infections. I do not use the word 'hate' lightly. I use 'f%&k' a whole hellava lot more because I feel hate is too strong of a word to use casually. I hate you Lyme. I f-ing hate you. There, I feel better now. Thanks for listening.”

~written by another brave and frustrated woman fighting late stage Lyme

Brutal and Beautiful - A Lyme Morning

Brutal and beautiful.

Recently a friend used these words side by side. I would never have thought to use them together. They seemingly describe the opposite but in reality so much of life is both brutal and beautiful. And, if we choose to look at the brutal and find the beautiful there can be immense healing.

I have been thinking about these words specifically around cancer. When I was a young girl no one talked about cancer. We new it existed but it was a very private journey. I remember at some point in my childhood seeing a book or magazine with photos of breast cancer survivors. I remember being glued to the pages and amazed at their courage and their beauty. There they stood with missing breasts and yet their beauty shined even more brightly than I could have imagined. Those images were burned in my head.

This summer my neighbor was fighting cancer. She had long beautiful hair that probably hadn't been cut in a few decades. One day I looked out the window and she was walking down the street with a huge mohawk. The next day her head had been shaved. She walked bravely with her head uncovered for the world to see. I thought then how brave she was. Now I think of those words, brutal and beautiful.

Since I was diagnosed last Spring and started treatment for late stage Lyme Disease I have often compared it to fighting cancer. I have done this mainly because people in this area of the country have no idea what Lyme disease is, the seriousness of it and how intense fighting it can be. Comparing it to cancer treatment somehow gives them a point of reference. But really the two are not that similar and somehow what Lyme looks like needs to be shown to the public just like how those brave women showed us the face of breast cancer many years ago.

So, now comes the personal part of this story and where the words brutal and beautiful came from. A few weeks ago I noticed that one of the online facebook Lyme support groups was advertising a photo contest. She was looking for a photo that portrayed the physical, emotional and neurological aspects of Lyme and could also serve to educate others about Lyme Disease. My husband is a photographer (as a hobby), so I mentioned the contest to him.

We didn't really talk about the contest after that because I had a large die-off of bacteria and had an intense "herx" reaction. I was quite sick for the following weeks and photography contests seemed to be a distant memory. The last day to enter the contest was Sunday. For some reason what spoke to me most about what Lyme looked like in this house was my morning detox bath ritual.

Each night I take medicine that boosts my immune system (low dose naltrexone) and in turn kills bacteria. When I awake (often after having a very restless "sleep" with vivid dreams) I don't feel well and can actual sense the toxins (by looking at my tongue, smelling my body, etc.). I spend the next hour taking medicine, filling the tub, adding baking soda and salts, lighting candles, making ginger tea and lemon water, adding lavendar oil, dry brushing my skin and finally entering the dark candle-lit water. Once I enter the intensity begins. Sweating, nausea, retching, pain, heart palpitations, anxiety, fatigue are just a few manifestations. I know the process is deeply healing, so I tolerate the immense discomfort and just keep breathing. After nearly 25 minutes I rise and shower. Afterwards I have to lay down in the bed for some time because I feel so sick. Eventually the symptoms usually abate so I can dress and start my day. It's an intense process that for me defines what Lyme looks like. So, it seemed perfect to use this scene for the photo contest.

On Sunday my husband said to just do what I normally did and not pay attention to him. I went about my routine as he laid on the floor taking pictures. After the bath I was quite sick (as usual) so I went to lay down while culling through the pictures. Once weeded through, he did the editing of each shot. He came into bed to give them to me and burst into tears. I held him while he sobbed and sobbed and sobbed.

The sobbing seemed to continue. The pictures now were calling to be put to music. We watched and sobbed. Looking at the reality, seeing the pain, is different from living it each day. My daughter came in and asked to watch it and cried. It then became clear I needed to share it. I started emailing it to friends and family and posted it in a Lyme group online. More tears from everyone who watched it. The tears seemed to bring an immense healing for my family and hopefully for others. Since then the anger and frustration, that had been prevalent for weeks, has melted. It has been amazing!

My dear friend sent an email that really defined what had happened. Brutal and beautiful she said. Even now when I type these words it gives me chills. Showing honestly our pain (no matter the reason) can be brutal. The beauty comes in the courage that it takes to be real. So, I offer this short slide show to you if you would like to see it (and feel free to share it). It is intense - be warned. A Lyme Morning is raw and real, just like life.

http://manaserenephotography.smugmug.com/Family/Lyme-Morning/21439707_SQH5rg

Honesty

I haven't been able to write for so long. I have a few drafts saved that feel contrived and not from the heart. I was just remembering something someone said to me today. I couldn't even remember who said it or why. Now it came to me. I was sitting in a chair in a class. Maybe I was squirming around, again, I don't remember. The woman behind me asked if I was in pain. I smiled and said I was okay. I knew her but just didn't want to get into it.

That is why I haven't written in so long. I just didn't want to get into it. Or maybe I didn't want to to try and find words for what is just plain hell. One or two sentences on Facebook somehow seemed easier. I try to stay positive most of the time and only "let it out" around those that know me very well. Plus, who wants to really hear about how I am? Does it hurt? YES - practically everywhere! More than I can ever begin to explain. The symptom list is so long that I can't even bare to track it for my doctor anymore. I  keep smiling and moving forward because I have no choice. I am too sick to stop fighting. There has to be something better at the end of the rainbow for me. I must believe that.

I wonder why I finally decided to write about this. Maybe because I want this blog to not only be a way to "tell people how I am," which was the reason I started it. Maybe it can be a memoir of sorts of my battle. Something to look back on when I am well. In the present though, even typing or writing or talking about this hell, is...well... hell. I think I need to bust through that though. I have been spending a lot of time reading about what other Lymies are going through. It has been healing for me in many ways, but also a bit of an escape. I can just listen to them complain about all their symptoms and not have to own up my myriad of feelings.

I'm so tired of being this sick, of not knowing what the future holds and having no clue how long it will take to beat this disease. I'm tired of not having the energy or any sense of predictability to plan for my life. And, at the same time I know these are just feelings. Somehow I am given the strength and resources to keep fighting. I must believe that the solution will show itself. There is an order here and it will be okay. It is okay, even if it doesn't feel remotely that way.