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.