Wednesday, December 28, 2011

Thank you teenage daughter for showing me the light

It's time to write again. I wish I knew what to say. I usually have an idea or some thread to start with. I rarely begin to write until the thread is there. Tonight is different. The desire for this rather odd cathartic activity is present without the thread of inspiration. Maybe the thread of inspiration will come or maybe I will be able to process some of the rumblings in my head without any witty statement or metaphor to pull it all together. I think the chances of some lightening striking my head and something cohesive coming together are pretty slim.

Maybe not. I may have just been struck. Beside me is my teenage daughter. She has spent part of her day (that didn't involve texting, KIKing, FaceTime, Facebook, YouTube, email, Instagram, iTunes, Netflix or Hulu) drawing an amazing picture of an elf fairy walking down a path surrounded by darkness. Held in her hand is this beautiful bright sun. Aha...there is my inspiration. Thank you teenage daughter!

Okay, now back to the point (that is, if I can remember what it was). Hmmm. Oh yes, brightness being present within a sea of darkness. That is the best way to describe the last few weeks. I feel as if I have been immersed in this very dark, unknown, painful and scary illness. I have been off antimicrobial treatment (a.k.a. meds that kill the little $%^&$ bacteria) for over 2 months waiting to get strong enough to restart again. I am resting, detoxing, resting and more resting (and more detoxing). Also awaiting some strange and expensive IV therapy to arrive from Switzerland that will hopefully add an armor of protection around my cells so they don't get so affected from treatment like last time. Not working much and falling deeper into a financial hole. No more gift cards or house cleaners or meal fairies (so grateful for when I had them though). Now it is just me and my life. Keep putting one foot in front of the other. Inhale and exhale. Listen to the body. Be patient. Do what needs to be done with the family and keep laughing whenever I can. Headache is there all the time again along with her friends sore throat and back pain (and exhaustion of course). At least the sensory processing issues and all the other myriad of neurological problems have improved. Oh no --- I'm getting sucked into the boring details of Lyme again. I must extract myself. Just a minute.

Okay, I'm back again. Light being present in the midst of murkiness. That is what I am focusing on now. I must catch hold of the light and see it present at all times, even when I feel as if I can't see anything. I am not just holding the light. I am the light. It's so easy to just see the darkness when surrounded by sickness and a sea of unknown. Thank you again teenage daughter for showing me the light!






Monday, December 12, 2011

Progress

So often we judge our progress by what we think we have accomplished. Has there be improvement? Am I feeling better? More functional? Less symptoms? Stronger? I can think of so many instances (other than this oh-so-boring fight against this pain-in-the-ass disease) where this is how we judge ourselves and those around us.

This Lyme disease business sure is teaching me a lot. Progress just isn't always linear. And just maybe it shouldn't be judged "constantly." I recently stumbled upon a chronic Lyme support group online (which has been both disturbing and highly comforting at the same time). Someone said something to me that has really stuck, "Recovery is so long that it can be very hard to see an end and its also so slow it's hard to actualize to yourself that you're improving. You really have to stick with it and wait and reassess not every few weeks, but every 3-4 months. If you do that you'll notice the incremental improvements. We are all stronger than this disease. All it takes is belief, faith, hope, and patience. I believe that someday we will find a cure. I have faith in those I have chosen to provide me care. I have faith that God will support me through this battle. I hold onto hope that someday I will be well enough to do the things I love doing that I no longer can do. Above all, we need patience because the road to health for us all is long and slow. The last is the hardest for me. But I am learning. Two steps forward, one and a half steps back still equals progress." It's hard to remember this sometimes, but oh so true!

I am progressing even though I can't say on a day to day basis how much progress there is because I am inundated by the symptom laundry list of that particular day. Now that is comfort. And just maybe this is a better way to look at my family and the world. Patience really is a virtue and one we tend to lack in many arenas. When things seem "bad" we assume there is regression and when they are "good" we assume that is progress. It's just not that black and white.

I am learning all about the many shades of grey. Now that is progress.










Sunday, December 4, 2011

Reality setting in

The pain in my hands is beyond excruciating tonight. The headache waxes and wanes. The anxiety for no apparent reason seems to be building again. Feeling nauseous and restless. Took a Epsom salt bath for the fist time in over a month. Hoping it helps with the pain and doesn't cause any herxing/die-off symptoms. Next IV treatment that may help these symptoms isn't until Tuesday. Wondering what tomorrow holds while attempting to stay present and breathe. Staying in the present and living minute to minute helps (at least that is what everyone says). It's hard. Tonight is hard. The reality of how difficult this healing process is, is setting in tonight. The reality that it gets much worse before it gets better and it can take years is setting in. It's really a hard lump to swallow.

Another breath.

I am thankful for so many steps forward this last week. The smallest accomplishments seem so huge these days. Really noticing all the little flickers of progress seem to help. But yet in the moment I feel sick...really sick and alone. I feel like this disease has enveloped by life much more then I ever imagined. Being this sick for this long is lonely. Really feeling the isolation and loneliness tonight.

Digging deep and breathing. Trust. This too shall pass.




Thursday, December 1, 2011

Why are you still so sick?

Living with Lyme is hard. Trying to beat Lyme while attempting to live a full, happy life is really hard. When I went to this blog to attempt to gather my thoughts to write something coherent I noticed how infrequently I have written the last few months. This outlet used to be so healing for me. This is just another indicator of how sick I have been. I wish there was a way to explain the zillion symptoms that I have that come and go and sometimes cause so much havoc that just taking another breath feels like too much work. I wish there was away to explain how difficult this process is and how I wish that I could say "yes, I am feeling great" or when someone asks. I wish I could explain why I am "still not better" or why I "feel sicker then I look" after taking all of these medicines for all these months. I wish I could explain how scary it is to feel like I am blindly walking in a mine field not knowing what treatment will help or will it make me sicker. I wish I could explain how scary it is to have more money going out then coming in. I wish I could explain what it is like to not have any answers and to "still be sick." I feel isolated and alone. Friends don't call or connect like they used to. I know everyone is busy and I am not a joy to be around, even though I still try to keep a sense of humor....when I am not deathly ill at least. I wish I had words to explain the $#%%-ing unexplainable, but I don't.

What I can say is that I am praying like I never have before. I read online many others who have gone through/are going through very similar battles. I know this isn't in my head or my fault. I know I am not alone and that I am loved. I know I will get through this even though some days it may be hard to remember this. I am thankful to start this PK protocol (too complicated to explain) and I'm praying that it helps. I need to be strong enough to resume treatment of the Lyme and to treat the two co-infections that I likely have (Bartonella and Babesia or Bart and Babs as I affectionately call them). I wish I could explain what this is like and why I am not "better yet" but I can't. When you ask how I am I will either say "well" or "hanging in there" cause' the truth is just too hard. Ultimately I know I am well. The "real me" is fantastic. It is just this body that is struggling right now. I will get through this....repeated like the little engine that could :) I really hope this new protocol helps. I am getting early signs that it may be. Long may that continue!



Wednesday, November 16, 2011

Fill, Dwell, Drain

How to not loose faith? How to keep hope alive? How to believe you are getting better even though the body feels so awful and that awfulness just keeps changing and shifting? How to keep hanging in there?

These are just a few of the questions that have been rolling around in the head lately in between naps. Today has been quite interesting. I have had a lot of deep thoughts and contemplations. All of it seems to be about having mind numbing hope and courage, a tenacity for life, and ultimately the ability to be fluid. Flexibility seems to be key. This has been a huge stretch for me --- a place I need to flex my muscles and expand. It's happening no matter how hard I try to fight it.

Fighting illness is challenging. Fighting Chronic Lyme disease which is so complicated and the treatment is the opposite of straight forward is challenging beyond words. This phrase "beyond words" is something a say a lot. I guess that is because so much is beyond what simple words can convey.

Today I have remembered a lot of deeply inspiring times in my life. I have been blessed to have had so many life experiences that teach me the answers to those questions I have. I can't imagine how I would keep going without all these beautiful people that make up the fabric of my memories. Working with medically fragile children and the people that surround them (families, therapists, service providers of all walks of life) is like the icing on the cake. Whenever I want to shout "not fair" or say "enough already," all I have to do is take a trip down memory lane or look around me. I realized that today.

I also realized how desperately I want to be done with this disease. It has been 8 months since I got really sick again and began treatment. I really want to be done. But I'm not done and I don't have a clue when that will be. I want to have a steady curve of improvement and that is not what is happening. Instead I am on a roller coaster that seems to change every day, sometimes many times in a day.
I am learning to lower my expectations and find joy in the simple things, much like the families I work with do. You deal with what the day has delivered and make the best of it.

The last few days everyone wants to know how I am. They know I was so sick for weeks that I couldn't work or function without help. I look better, but how do I feel? Honestly, I feel crappy. Less crappy then the,"God please take me" crappy of a few weeks ago. Somehow through this "crappiness" my spirit and humor are returning. I feel less broken and more hopeful.

This morning I read about an 81 year old Vedic monk (Hindu saint) who has recently started needing daily peritoneal dialysis. He is still teaching classes, attending meetings and doing more in a day then most 18 year old youth could manage. How he described his dialysis really made me chuckle and think. Fill, dwell, drain. Very simple and profound words. That is really the lesson for life. Fill ourselves with knowledge, dwell on it/think about it in various ways and then let go. I really like this metaphor. This is one I will chew on for a while.







Tuesday, November 8, 2011

Lessons of the Bumpy Ride

Wow - what a ride this journey is. The last few weeks have been bumpy to say the least. It seems like my nervous system has just had it. Too much neurotoxin led to collapse on just about every level.

Today I am choosing to not relieve it and to instead see the profound lessons I have learned recently.

Rest

Let go of expectations

Trust that the help that is needed will be provided

Notice the background, patterns and triggers

Gentleness - with myself and others

Forgiveness - with myself and others

See that I am not a failure - I am perfect (with my imperfections)

Life is not linear. There are ups and downs, peaks and valleys. That is okay.

Let go of extremes - take the middle path

Sleep is so important! Especially when the nervous system is just fried!

Embrace fear. Embrace the mind. See what it has to say. Listen and adjust as needed.

More rest

More trust

More letting go of expectations

More gratitude

More joy
























Wednesday, October 26, 2011

Laughter in the Battlefield


I seem to be in quite a predicament. I have Lyme disease. It is a disease that is known and treatment is supposedly known. Yet, once you have had it for many years people doubt that it exists. Even if they acknowledge it's existence, have test results and a positive history to prove it, they don't quite know how to treat it.

It is like we are in the middle of a battlefield with an unknown number of assailants, a plan that is not very clear and weapons that we don't really know how to use. We march forward anyway knowing this is what is to be done. Sometimes we feel fearful and other times confident. Somehow we know we are on the right path and at the same time get startled by the terror of walking a path that feels so dark and dangerous.

We keep going. It is what is to be done and now is the time to do it. You may wonder why I use the term "we." It is in reference moving through this journey with my amazing naturopath. He has made a choice to believe in me and to guide me through the murky waters of Chronic Lyme Treatment. We are both "virgins" in this territory and seem to take comfort in each other's honesty and slightly twisted humor.

Sometimes we laugh and make jokes about things that aren't at all funny. When the reality is dark and treatment is not going as planned, somehow the laughter helps. Like today for example, I ended up back in the doctor's office (again) with a severe neurotoxic reaction from killing of too many of the little lymies. I feel like my body is on an unpredictable roller coaster ride with a driver that has never led the train before. I trust him though and keep trudging along. He laughs when I bring in a gigantic bag filled with baskets of medicine cause' I knew I wouldn't remember the doses of my supplements. I laugh when he decides to palpate my kidney after me complaining of how it feels like someone is kicking me in the kidneys. He was being a doctor, so I can't fault him for wanting to confirm this. One vertebrae above the kidneys...okay. Second one...okay. First tap on the kidneys stimulated a scream that could be heard round the world. Poor doctor, he even jumped and then profusely apologized. After I caught my breath and my kidney stopped screaming, I couldn't stop laughing. I laughed on and off for hours. Why? Don't know. This body is just such a mess right now and treatment is not going remotely on course (not that there really is a well laid out course), so laughter seems better than hysterical crying.

Laughing in the battlefield. Sometimes you just have to do it. It seems to help both doc and me. It is like letting a little air out of a balloon that is about to pop. I only end up in his office when I am super sick. Laughing about needing a toxic waste sticker on my head seems somehow appropriate. My doc is amazing. Today he rocked. He laughed when I joked about the IV price not being as much bang for my buck as recreational drugs. I laughed back at his jokes about how good he did in giving me a head rush. Laughter in the battlefield. It helps. 

The field is changing again. Too full of toxins to continue like this. The new plan: at least a week holiday from the Lyme meds, doc goes to the ILADS conference in Toronto and hopefully comes back with "pearls of wisdom" in how to treat me (I suggested he take lots of Ginko to help his memory), re-start Lyme meds on 10/31 (Halloween -- interesting choice of days) and stay at a low dose (5 drops) for one month in hopes of killing the little Lymies without feeling like we are killing Faith in the process.

So much for my "plan" to increase once a week and be at full dose a year from when I finally got diagnosed. Nope, I am in a changing battlefield. It feels like it changes every moment and I must be flexible and go along with it. I have no choice about needing to move forward amongst great internal chaos and pain. I do have some choices though --- one being how much I laugh. I choose to laugh a lot. Thank you to all that help with this laughter medicine. It is really good stuff!












Thursday, October 20, 2011

Noticing Old Patterns

It has been a long time since I have written. My last entry into this "strange world of public journaling" was over 2 weeks ago. I had just realized that my body was starting to scream "stop" again in regards to increasing my medication. This time I decided to listen. I held the dose for about 10 days and now I will increase once a week at the most. My kidney pain and overall nervous system sensitivity improved and overall I have been okay. What has taken root now though feels equally as debilitating but oh-so-subtle.

I am noticing these very old patterns of self-sabotage. I know what nurtures me and helps in my healing. I haven't made overt sabotage. The attacks have been "under my radar." The cumulative effect is now noticeable and I realize, just like the kidney pain a few weeks ago, that I have to take action or this delicate balance in the body will start to deteriorate. The clouds of depression are hovering just as the rain clouds in the Oregon sky become more prevalent. I have tools to counteract this, yet I have been sub-consciously choosing not to.

I know I need to avoid the self-judgement and subsequent lashing that is a long seeded pattern. I just need to be aware and start to make changes. One moment at a time. It won't be "all perfect" just because I noticed the patterns that undermine my healing. But shining this awareness will bring it into my consciousness where I can make objective decisions. That doesn't feel overwhelming or extreme. I can do this.

Today I will notice patterns that don't serve me and make an effort to shift them. Writing again was step one, and I did it! (I will also choose to celebrate these small triumphs :)


Wednesday, October 5, 2011

A Different Bumpy Road

I feel like I am walking down a road that is so different than the same road walked a short time ago. The internal "bombing" of the little lymies with Samento and Banderol began again. I didn't think I was having major bacteria die-off symptoms because I was on such a low dose compared to when I stopped before. Well, I think I may be wrong about that.

Today my kidneys hurt so bad I feel like I am in labor. I am so chemically sensitive that every scent, dust, potential mildew smell sends me into either a breakdown, an allergy fit or an asthma attack. I am so emotionally labile that it is difficult to function. I have been having intermittent hot flashes again too. No major headache or neurotoxic feelings like I had before or the "herxing" that I had become familiar with. Some stiff neck, but mild compared to the meningitis-like neck I had before. Hmmmm.....

After a little "hot-tub-reflection time" with my husband, it seems apparent that I am reaching a toxic point and need to hold tight on my dose for a while. It is just so different from last time that I didn't even see the signs until I felt like I was sinking in quick sand.

I thankful for the awareness. The plan for tomorrow: no more increasing of the medicine for a week or so - hold at 7 drops, call/email the doctor and see if I need to change around my medicine or come in for an IV, focus on detoxing in every way possible (hot tub, sauna, walks, stretching, pranayama, lots of liquids, etc.), eat really clean/simply and of course --- be more gentle on myself.

This process of writing often brings clarity and objectivity. It did that tonight. Yippy.

Tuesday, September 27, 2011

'No Vacancy' for the Clouds of Depression

The clouds of depression visited today. They are heavy and filled with doubts and fear. I met them from a familiar position. Supine in the bed. I gave in to fear (and all it's associates) and hid under the covers. Truth is, that familiar stance doesn't really help. What finally helped is getting out of bed and celebrating day one of a beautiful Hindu goddess festival, Navaratri. I had to get dressed and eat something before I could begin the worship. This was a good start. I even cooked! Kirah commented that it had been a while since I cooked anything. Yup, that is correct. It wasn't fancy but it sure made the house smell nice. Then I put on pretty clothes and went to our little shrine for worship. Too much of a headache was there to read the prayers. Instead I stretched my muscles that are beginning to feel full of little dead lymies (the image just doesn't do the feeling justice -- trust me). It was nice to be out of the depressive bedroom cave and in a cheerful place. After dinner I forced myself to listen to a class online that is inspiring. Okay, I think the clouds are finally drying up. That is good.

Why write about this? Not sure. I think what I am to learn from this day is be alert for these clouds of depression. I must remember what they look like and recall that retreating to the cave for the day with the computer on the lap doesn't really help. For whatever reason I have always pushed away that which is helpful to instead make the situation worse. I don't have to do that anymore. It's okay to do what is helpful. Sometimes it may take a little while to remember as old patterns take time to break. I can do this. I know it. I must do this.

Being in the midst of treatment for Lyme disease is a perfect breeding ground for depression. Letting in the depression, the fears and the anxiety seems easy. Unfortunately with the easy entry comes collateral damage -- more assault on the immune system. My immune system has to be on top of it's game in order to battle the lymies. I found out today that my basement is filled with mold. This was the catalyst for the day of depression. As I often tell my daughter, I have to stick to the facts. The basement got moldy. We have to clean it up. I am deathly allergic to mold which could be making my health worse. Oh well. Terry will do what he can to fix it. I can support him with love and kindness. My body fighting against mold while fighting the lymies is difficult. I don't need to add fear, anxiety and depression onto that. There isn't any room at the inn for these fellows.

I have to remember that. There is no room at the inn for anything that isn't helpful. Okay. That's seems easy enough. Hang the 'no vacancy' sign. I can say to the depression clouds, "We are full right now. I can put you on the waiting list, but it is unlikely you will get in." Excellent.


Saturday, September 24, 2011

Crossing the Bridge

My inspiring co-worker wrote these words to me today that I find to be filled with meaning. "You have to cross the bridge alone, but you are surrounded." I can see this image so clearly. What is amazing to me is how fuzzy the characters are that are surrounding me. They are there, but almost invisibly. That feels terrifying. There is this pressure to somehow have someone take away the pain, fear and anxiety that come from this stupid, stinkin' neurotoxin being released in my body. And if I they can't take it away, then surely they can understand. There must be something I can say to make them understand.....

But I don't think they can understand. I don't understand. My husband just said, "communication with you is difficult right now." I agree. I can't seem to communicate with this body/mind that feels like it is on it's own crazy journey. It brings up every insecurity and fear I have.

All these fears and insecurities used to have me running for the hills. I can't run anymore even if I tried. Instead I am crossing this bridge, alone and surrounded. I know there is so much support there. I have to remember that. I just don't wanna do this. That's okay too. I don't wanna feel so f-ing sick. That's okay too. I wanna be able to think and talk with some degree of sanity. That's okay too. But, if I get lost I will remember that I am not alone.

When I feel like no one understands me I have to remember that everyone has crossed "their bridge" in one way or another. We all have our intense challenges in life. Some are more private and some more open, but they are there. Somehow we make it.

I will cross this bridge even when I feel alone. It is not as scary as it seems. Why is it not as scary as it seems? Because really the whole universe is there with me, in me. I walk in my glory. I am surrounded.


 

Friday, September 23, 2011

Getting Rid of Lyme - a link to another blog with good answers to more FAQ's

I just came across this interesting blog that explains the essence of Lyme Disease treatment. It includes the often asked questions about the why the controversy, different kinds of treatment, why people respond differently to the disease and the treatment, and why detoxing from the dead bacteria is as bad as the disease itself.

This author explained everything quite well. If you have time I suggest taking a peak. If you read what he says it will saves me time in explaining. Thanks!

http://www.lymediseaseblog.com/getting-rid-of-lyme/

Thursday, September 22, 2011

Knockin' Knees

This fear business is very interesting. I have been noticing waxing and waning fear for some time now. I seem to be riding the wave and just noticing it. I realized that was my covert way of hoping it would go away instead of accepting it is there. I want to be tough and strong and positive and all that jazz.

The truth is though, I'm knee-knockin' scared. It's time to start the Lyme Disease meds again. Before my hiatus due to a neurotoxic reaction there was mild fear, but mainly anticipation about finally getting started on this "operation kill the little bastards." Now it is different. The memories of how sick I can get are very present. The feelings of being completely out of control of my body, mind and emotions are at the surface.

I can go through all the positive thinking mumbo jumbo and know that this is what is right and I will be fine. I am loved and supported. I have learned so much from the treatment so far and I will listen to my body more closely now. I will not push when it says stop. I will rest as best I can and keep my stress down. I know all these things yet the knees are still a knockin.'

It is impossible to explain to anyone how awful it feels to have massive amounts of neurotoxin released in your body at varying amounts throughout the day and night. It is impossible to explain how it feels to not be able to function as you are accustomed to doing. It's just impossible to explain how it feels to take medicine to get better that makes you sick.

I am strong. I will be well. I am surrounding myself and these medications in a ball of light. And my knees still knock. I'm scared and that's okay.

Sunday, September 18, 2011

Variability, Accepting help and Empowerment

I was just thinking about a few different topics and feel the need to sort this all out through writing. If I am a little disjointed in my thinking you will just need to hang in there.

First topic -- variability. When someone is sick the common phrases are often, "Get well soon" and "I hope you are feeling better" or "You look good today." I must admit I am guilty of these over-used sentences as well. When we utter these words our intentions are good. We generally care about the person and want them to feel better. We also feel helpless and without any words to express how we feel. I must say that being on the other end of these words sheds some interesting light on what it feels like to being a receiver.

I think these phrases are appropriate if you have a cold or the flu, but in chronic illness or when in treatment for an illness they take on different meaning. I finally realized why tonight. Variability. Typically recovery from a virus has a curve that starts out really sick and gets progressively better. Treatment of a illness, like Lyme Disease for example, doesn't follow that kind of pattern. Really it follows no pattern (I will attempt to not rant about that). If I am constrained to describe a pattern I think the only word that fits is variable. It is up and down. Sometimes you are sick for hours, days or weeks. Then there is a reprieve for some unknown amount of time, and then it worsens again for some unknown amount of time. Sometimes this is because of the little lymies dying due to medication, sometimes because of massage or exercise or a sauna, sometimes because of the immune system waking up to fight a bit and sometimes there is just no discernible reason.

As I move through this treatment I realize how hard this is to accept. I want predictability. I want to be on a curve of "getting better soon." I will get better. I am on the right path. But I don't know when"soon" will be or what it will look like. And for now it seems to bounce between different levels of survival. Some days doing okay and others barely hanging on. It seems like those that are around me much seem to understand this now. I can't imagine how hard it is for them and I really appreciate their support. That brings us to the next topic....accepting help.

This accepting help business has never been my strength. I have always been the caregiver in one way or another. When my co-workers and friends kept offering to help and my family reminded me of much I needed it, I finally accepted. I think some of this accepting help had a catch for me. As long as I vowed to "give back" and help others in this way then it seemed okay. Twice this weekend, two beautiful women that have been offering help, reminded me that I have given for a very long time. Now is just the time to receive. There is no need to look ahead or feel guilty. Uh-oh. Leaving my comfort zone.

Wow -- this seems like such a new concept for me. And it also shines light on my not-so-pleasant image of myself which has never exactly matched how others see me. Being present and just accepting help without feeling guilty or making lists on how I can return the help in the future feels like swallowing a pumpkin. Yet, for some reason, people are coming out of the woodwork to help me without me even asking. Once I got clear on what would be helpful it just started to happen and now it is like a roller coaster picking up speed. For me though it brings up the very deepest of my core issues -- feeling worthy enough or deserving enough to be helped. Whoa. Thanks everyone for ripping the band aid off of that one. I may say that sarcastically but really I mean it. Thank you. Thank you for helping me and thank your for making me see that I am worthy of being helped. Long may I remember this.

One more thought just popped into my head that just must be written so it doesn't get misplaced in my Swiss cheese brain. Today I mentioned to someone that I feel like I have no certainty in my life. I can't count on my body, my mind, my ability to work or make money, my ability to parent or be a wife or a daughter or a friend. I described feeling as if I was walking naked through a field --- just me and the sky -- and how scary this was. A very wise woman reminded me today of how to alter this sentence. It is just me in space, in all my glory. Hmmm. That is quite a difference. Suddenly I felt empowered and alive. Me in all my glory, in charge but not needing to control that which cannot be controlled or need not be controlled. Hmmm. Lots to contemplate.

Not an easy weekend, but I can see that lots of muck came to the surface for healing on many different levels. Excellent.

Something positive?

Someone asked me how my day was yesterday. He asked if no news was good news and I replied yes. He suggested I post something on my facebook site since people would like to here something positive. That seemed simple. It was simple until I started forming sentences. Then it hit me how stuck in a quagmire my thinking is. It goes something like this, "I am okay today but..." The "buts" seem limitless. A dear friend once told me that every time you say the word but you should imagine a old man's hairy butt crack. It is a sure fired way to deter one from such sentences. The image is graphic but doesn't seem to be working currently.

Here is the issue. I have always been a over-achiever and die-hard perfectionist. I hold myself and my surroundings to standards that are not really reasonable. This has always increased when I didn't feel well. I nit-pick myself into feeling more inadequate. Now that that my physical health is truly impacting every section of my life all of this is magnified. Trying to find the positive makes looking for a needle in the haystack feel really easy.

I feel stuck. I would imagine it is like when a 3 year old can't break out of a tantrum no matter how much he/she tries. Every positive thought seems to have a sneaky little shadow of a negative attached to it. I seem to be great at helping others with positive thinking but at the moment I feel like a giant spot-light is shining on my negative thinking.

I don't have an answer to this right now. I will resist the urge to sarcastically beat up on myself about this (the words were there itching to be typed though). I know all the cliches about be in the now, the now is perfect, give thanks for the small things, etc. Again, resisting the urge for dark sarcasm or inappropriate hand gestures.

I guess I have to muster up some gratitude for being forced to see that this must change. Anyone have a magic wand I can use to find Mrs. Positive?

P.S. If you were wondering about my health, here is the one minute update. The bulk of my symptoms seem to be improved. Intermittent pain and rage come to shake things up more than I would like. Very tired and out of my self-care routine. Still working and getting more accomplished each day. Surrounded by support as long as I don't hell at everyone (either in person or via some form of technology) and tell them to go away. The plan is to start my Lyme treatment again on Friday morning. As much as I want to say these feelings are gone, it just ain't the truth -- I am scared. I don't really believe my body can handle this and still be able to function. Okay...positive? The positive is I am a lot better then I was a month ago after this neurotoxic reaction and my body is ready to start this treatment that WILL get me well. (I am biting my tongue to not say, but.....)
That's a start at least.

Thursday, September 15, 2011

Get a grip

I'm out of gas tonight. The internal tank feels empty. Truthfully it has been empty for days but I have kept pushing because there didn't seem to be any opportunity to take the day off. The result --- utter collapse today. Interacting with other humans (and even animals) has not gone so well. I have been hurt or offended or hurt/offended others since my head left the pillow. When it seemed like there was no way I could stop yelling (or crying), somehow I pulled myself up by the bootstraps and kept going (until the next meltdown).

All this is a bit disheartening. I should probably lighten it up with a little dark humor. Here are a few of my favorite quotes today. This was my explanation for not bringing kale to my supportive co-workers, "Sorry I didn't cut down my kale trees for you today. I was busy having a nervous breakdown." My doctor explaining how I get more oxygen to the tissues and make the little lymies not want to be there, "There is a protocol that involves wearing oxygen while jumping on a trampoline." My calm response as a glared at him..."I'm not ready for that." His response, "Saunas are fine too." Excellent.

I know being positive is the way to be. I am just plain out of positive. I am left with whatever seems to fall out of the mouth. Darkly sarcastic seems to be the best of the barrel -- hysteria being the not-so-desirable choice.

I am ready for a shift again yet it just seems out of reach.  I know I need to focus on the moment and pray to a higher power for help. My response to that is some not so polite hand gestures that have seen the light of day on occasion today.

Get a grip Faith. That is my prayer tonight. 

Wednesday, September 14, 2011

Appreciation

I gotta give a shout out to all of those amazing people that have surrounded my family with various kinds of support. I wish I could somehow thank everyone by name but that seems daunting. Partially because it would be a long list and also because my memory has giant Swiss cheese-like holes.

My workplace  -- just amazing! They are some of the most positive, loving and supportive people I have ever encountered. They respond when I ask for help and they respond when I am too incapacitated to even know how to ask for help. And let's be clear, these are very busy folks who are not exactly wealthy. Yet they give meals, gift cards, house cleaning, smiles, hugs, gifts of laughter, and so many other things. I can't imagine a more supportive environment.

My spiritual community -- also amazing. They are organizing a meal list and have most of the nights covered the next few weeks. I have some gift cards from work to fill in the blanks. Again, I am so grateful.

My family and close friends -- INCREDIBLE! I don't even have words to describe what they are doing for me.

My medical team of various modalities -- again I am speechless. Dr. Campbell just feels like an angel that was sent here to help me see how this body can finally heal.

It is really interesting accepting all this help. Being a nurse is about helping others. This accepting help is very new to me. This being vulnerable and letting others see what I perceive as weak and flaw-filled, also new to me. When people hear I have been sick for 16 years they are shocked. (I really have been the master faker). Faking it is just no longer an option. Move on or give up. Giving up is also not an option. Maybe "fake it and make it" for periods of time when I must. But otherwise I think this time is about letting go of this need to always be the one in control and "helping" others. It is time for me to be real and open. It is time to heal.

To all those that lovingly offer their support while I travel through this time of intense healing THANK YOU THANK YOU THANK YOU!

Sunday, September 11, 2011

Thank you dear little lymies

Tonight I want to thank the dear little lymies.

Thank you dear little lymies for showing me that I have to learn to listen to my body or else the consequences are massive. This means getting enough sleep, exercise, saunas/hot tubs, supplements, medicines, meals (on time -- 8, 1, 6), managing stress, etc.

Thank you dear little lymies for showing me that I must stay in the present moment. Since the central nervous system is vital for everything and it is completely erratic at the moment, I can't plan for the next hour let alone the next day.

Thank you dear little lymies for showing me how much fear is there about not being in control. I must trust that all that is needed will be taken care of. I have to let go. I love all the sayings around this depending on the tradition. Two of my current favorites that have the same message, "Let the universe provide," or "Let Jesus take the wheel." I am smiling just typing that :) As my spiritual teacher keeps saying to me, "It's time to drop the doer-ship." Again, giggling, I think to myself...I better get out of the driver seat before I crash the car.
I think I need to elaborate on this control concept a little more. Control = safety for me. That concept has been there since I was small. I know intellectually that this is a false sense of control and safety. I thought I had a handle on this. My dear little lymies have thankfully shown me otherwise. I can't control my body, my ability to parent or be a wife or a kennel owner, my ability to work, how and at what rate I will beat this disease, what the outcome will be or even my ability to function at all. I can't control anything because there is really no need to control. Life is and will be beautiful without this white knuckle grip I have had on the need to "be in control. "

I said to my friend today, "I feel like I am walking naked. It is just me and the sky." It is like I am reliving my childhood and becoming a monk at the same time.

This feeling of having to reach out and accept help is intense. Help with cooking, cleaning, paying the bills, running errands, the kennel, etc. I must be open to the idea that what is needed will happen even if I am unable to "do it." I must let go of the penchant for guilt --- about everything. I must be okay with the idea that I may make a mistake or miss a deadline. I must be with myself, be quiet and listen. I must be happy and content with what is.

Tonight I was reading a book that I friend gifted with me. So much of what is said in "Succulent Wild Women," by SARK resonates for me in so many ways. This one line though is really pertinent for what I am writing about tonight and a clear opportunity to let go of a very old pattern. She says, "I am often seduced by struggle. It is as though it is painful to feel too good. I am used to the effort and sometimes confused by the joy." This is a sentence that clearly shines the light on a habit that must go.

Thank you dear little lymies for showing me that I can be, and that actually I am a Succulent Wild Woman right now. This includes all of my perceived imperfections and flaws. This includes all of me. It is time to drop the old patterns that are no longer are needed. It is time to be alive and open. It is also time to allow you to leave dear little lymies. You are no longer needed. Thank you though for all that you have taught and continue to teach me. Long may I listen.



Saturday, September 10, 2011

Falling into fall

It's time to fall. The days are getting shorter. I awake into a dark crisp morning followed by the sounds of geese on the move. There is a knowing it will be warm and sunny in a few hours, but for now I breathe in the cold crisp air and enjoy the sounds of fall. The garden is tired from all the heat and the the trees are about to let go of their leaves. All this letting go is necessary to survive the cool darkness of winter so they can sprout and flourish again in the spring and summer.

Letting go now so one can flourish later --- that is exactly where I am at. I have been forced to see that I have to surrender to this process and trust that it will be okay in the end. That I will be swimming and even surfing someday. Those goals seem much further away then they once did. Somehow though I have to keep trusting that it will happen.

I had thought I would be through the worst of the treatment by now and on to more of a maintenance dose. Instead I am still recovering from a severe neurotoxic reaction that has left me with a very sensitive and erratic central nervous system. My sweet sweet doctor is trying so many things to help. I do think it is helping, but much slower then I would like.

I have been off my Lyme meds for 11 days. I don't feel like I need a toxic waste hazard sticker on my forehead anymore. I do however feel like a child with a sensory processing disorder. My CNS is just not my friend. Half a bottle of Kava Kava seems to help that but it is not really kind to the liver. My doc gave me more "stuff" to help bind the little toxic bastards and hopefully excrete them. Envisioning a river flushing out this system and allowing the body to heal.

Letting the river flow. One day and time. Actually it is one thing or one moment at time. This is all I can do right now. And, if you see me getting ahead of myself and the subsequent "overwhelm" please remind me. I can't change how behind I am at work or at home. All I can do is one thing at a time. When I start to worry or get nervous the CNS seems to totally short circuit. So, feel free to chant the mantra when you see me getting ahead of myself -- one moment at a time.

One moment at a time does not include the ever present worry about how I will ever get caught up at work or how my body will ever tolerate more of these Lyme meds. One moment at a time is now. Now is what it is. I have to be present or I just loose ability to function. This is a good lesson that we all can learn. I would just prefer to not have such an intense reminder if I don't heed my own advice. One moment at a time. I am thankful that in this moment I was finally able to write again. Now on to the next moment -- time for a shower and some then some chai. Today is about falling into simplicity. 

Wednesday, August 31, 2011

Positive thinking tank on empty

It has been another really hard week. This week the menu consisted of intermittent really uncomfortable neurological symptoms that just... well, there is no way to say it politely... they just suck. The inflammation cascade I had from what was likely a massive Lyme bacteria die-off and subsequent Herxheimer reaction left me with a fried nervous system. One minute okay and then the next minute really not okay. I have had to stop the antimicrobial medication that I was on until my body can recover. I have spent ridiculous amounts of money on doctor visits and IV therapy to try to bring me back from what felt like the abyss.  I am in the busiest time of the year at my work and I feel hopelessly behind. My spiritual teacher and my mother are both here for a week, my daughter is getting ready to go to a new school and what I am doing? Barely hanging on. I'm worn out. I feel like I have no reserves left and the ship is sinking. And in some ways I would rather it sink that live in my current reality. I pray for strength to get through this very challenging time. I know I need to stay positive but tonight I feel like my "positive thinking tank" is just empty.

Friday, August 26, 2011

Acceptance

Acceptance.

I have to trust that I am being guided. I will get through this treatment and I will recover from this 16 year journey with Chronic Lyme Disease.

Sometimes it is easier to trust this process than others. This past week may have been the sickest I have ever been in my life. I have awakened at 2:30 this morning, so I have had lots of time to contemplate all the lessons I can learn from this not-so-easy week.

I feel like I am turning the corner on this latest healing crisis. With that corner turned I can actually think and contemplate again. I have been wanting to write but couldn't even string thoughts together or look at the computer long enough to make it happen. I am thankful to be able to write again as there seems to a lot of thoughts that want to come out and form themselves into tangible sentences.

This Lyme Disease dance is really beyond intense. Just when I felt like I was in a rhythm everything came crashing in on me like a bookshelf falling off the wall. I can see now how attached I was to the previous rhythm, time lines and ideas of what should happen. I spent a month getting stronger before I would start treatment knowing that I would get sick again. I could accept this because in my head I truly thought that the first few months would be really hard while I was increasing my anti-microbial (Samento and Banderol) medication and then it would get easier. I knew there would be Herxheimer reactions abounding, but because it felt short-term I could accept this. I thought that by the end of August I would be at 15 drops - my full dose - and then I could focus on the busiest time of year at my work. Some time ago the first bubble was burst by my doctor....full dose may actually be 30 drops twice a day, which meant 15 would just be a holding point for some time. I was able to readjust to this as long as a met my goal by the end of August.

Flexibility has never been a strength of mine. I am convinced this time as a Lymie is to teach me this. I will either crack into pieces or learn to be flexible! Some days I really feel as if I am cracking. Then I realize it is just a new stretch that is reaching areas that are particularly resistant. Accepting that I wouldn't get to "full dose" by September was difficult for me, but I could sort of accept getting to my "holding dose." Then in mid-August I realized that I wouldn't even make it to 15 drops by the end of the month. This was more of a stretch then I was willing to accept at the time. I really fought this.

I decided to push against my inner knowing and increase my dose even though I was still "herxing" (reacting) to the previous increase. Lesson learned -- NEVER EVER do this!

My mama always said it is okay to make mistakes as long as you don't repeat them. Well, no one has to worry about me pushing myself to increase my medications too quickly again. This choice will never be repeated. The result has been one to remember. I am really in awe of how obvious it was that this choice would end badly and yet at the time I just couldn't see that. It is so easy to get caught in our heads and convinced something has to be a certain way. This time as a Lymie is teaching me so clearly that I must listen to my body and my intuition. If I don't, the consequences are severe and immediate.

So, you may be wondering what happened. Well, let's just say it wasn't pretty. I increased my dose last Friday morning even though I had a terrible headache on Wednesday and Thursday. This should have been the first warning sign to tread lightly with caution. Mid-week is usually my strongest time. This is when I have been swimming, but last week I couldn't even think about swimming. Still when Friday morning came I felt compelled to increase. I knew I only had one more week to increase before I was going to hold my dose for a month. I just wanted to get to at least 13 drops. That seemed closer to 15 then 11. Others around me pointed out that I shouldn't increase but I chose not to listen. I quietly increased my dose. The results were not so quiet.

I spent the next week in one of the worst states I have ever been in. I choose not to relive it at the moment. Let's just say I had a classic and massive "herx" reaction leaving me feeling toxic and near death. I really thought I was either going to die or should die to end the hell that I was feeling. By Monday I couldn't even move or talk or function and was in more pain then I thought to be humanly possible. Somehow grace prevailed and I was clear enough amidst the dense fog that I was able to reach out for help. I am so grateful that the strength came to reach and that everyone responded so beautifully.

Since Monday I have talked to the lovely receptionists at my naturopath's office multiple times, seen my naturopath twice, received two IV injections, increased my supplements and added new ones to detox and support the body and cut my antimicrobial dose down to 5 drops. Yup - you read that right - 5 drops. The push to get to 15 drops has ended in quite the opposite way as I imagined. The body is teaching me, yet again, that I must listen. If I do not listen I will be quickly reminded of how that is not option for me right now.

I am finally accepting where I am. My body has had a massive die-off of the lymies which caused an intense inflammatory response that was more than the kidneys, liver and brain could handle. We likely got to a level of medication that was enough to kill the little buggers - a lot - and I am likely strong enough now that my immune system is finally kicking in and joining the attack. That is good.

So, now it is time to let my body recover. It is time to heal from this latest "internal battle." It is not time the time to think about killing more little buggers. Increases in medication will need to wait. It is not a race. It is time to get stronger again. I am accepting and will continue to accept that more each moment. I will envision all of my organs being soothed by all that I am doing for them. Everything will calm down. It is and will be all okay.

P.S.
Endless amounts of gratitude to everyone that has helped me this week:
Friends that listened while I cried in agony.
Friends that brought delicious meals for me and my family.
A doctor and support staff that were just amazing! (Dr. Campbell's office)
A lovely Ayurvedic lifestyle coach that spent so much time crafting a beautiful plan to help soothe and calm the body. (Upāsana Giglia)
Family that was beyond tolerant and supportive in every way possible! I know it was difficult to be around me and to watch what was happening. Thank you for hanging in there!






Sunday, August 21, 2011

Brain Squeeze

One of the hardest things about this disease and the treatment is the effect on the brain. Today I feel as if the brain is being squeezed by some large piece of machinery. Sometimes the effect is a headache beyond measure. Other times it is anxiety, hot flashes or rage. Really it just sucks! All the positive thinking in the world doesn't help when the brain is erratic and doesn't work as it is supposed to. I just wish I felt like myself today. I wish I could make a meal, finish taking my medicine, work on my "to-do" list and then later go to the lake with my friends. Do you hear that body? I hope you can grant me this request. I'll beg if I have to.


Saturday, August 20, 2011

Strength

Over the last few days I have been contemplating the word strength. It is very subjective what we consider to be strong. And each thing that is strong or the way in which we use the word is within a context.

For example, if I am standing on a log across a stream, is the log I am balancing on strong? Yes. Would it still be strong if I invite my five friends to join me? Probably not. As human beings we seem to be the same way. The interesting thing though is this perception business. We may perceive how strong someone can be, and their perception may be completely different based on their own subjectivity. It is very easy for one to think they have a certain amount of strength and to continually surpass that when life's circumstances require strength beyond measure.

I have been blessed in my life to be surrounded by such strong beings. To all of them I say thank you. Thank you for being so courageous and for continuing to move forward when life presents obstacles that are beyond imagination.

I think about my great-great-grandmother who became pregnant at a very young age and refused to marry. She was kicked out of the church and her family, yet she kept moving forward and never gave up. I think about children and families with cancer on the bone marrow transplant floor back in Pittsburgh in the 90's. I think about the children with severe medical conditions and disabilities that I work with now that have to live with unimaginable challenges every day. I think about my dear cat kennel customer who is leaving tomorrow for a bone marrow transplant and my neighbor who walks with courage down the street without hair as she endures the effects of chemo. I think about my co-worker who so bravely documented her journey through cancer and through her first of many triathlons. I think about another co-worker who has advocated for her son through profound seizure disorder that has left him seizure-free but with many challenges ahead. I think about my daughter and how challenging it is to be a teenager when life happens to plate up some really difficult experiences. I think about friends and family members who have been abused as children and yet they go on to help others and be positive examples of how one can survive. I think about my neighbors who so beautifully cared for their dying mother and how they advocated for her in the last days of her life. I think about my friend who has consistently surpassed what was imaginable and has gone on to raise two beautiful kids while helping them grieve the death of their father. I think about my friend sitting in prison and yet still calling his daughter every week to keep up with her life while maintaining a positive attitude and sound in his voice. I think about my mother who has cared for so many loved ones as they have aged and died. Some have been more graceful through their process than others, yet my mother has continually been there for them. I think about my dear teacher who continues to give to others in so many ways while living in a body that just isn't working properly. I think about an amazingly strong woman who despite her body's limitations continues to care for beautiful young foster-children with medical needs beyond imagination. There are so many others I think about too.

It is easy to get lost when one is in the midst of something that feels really hard. I know that is true for me. It does feel really hard some days. Some days I can't imagine how I can keep going. People tell me how strong I am but in some moments, in many moments, I don't feel strong. It helps me to think about all of the people I remember as being strong. I can bet they didn't feel strong in the midst of their journey. The message for me to is to keep going.

One day I will be able to look back on all of this and not just see how hard it was. I will also see the strength. And then I will be the one that someone thinks about when they contemplate what strong is to them.




Wednesday, August 17, 2011

A letter to the headache

Dear Headache,

I know we have been together for what feels like an eternity. You probably have gotten really comfortable in your current surroundings these last five months and consider it home. I can appreciate that and understand. But, I am writing to you to let you know that it really is time to....well, there isn't a nice way to say this....take a hike.

I am tired of you. I am tired of having varying degrees of headaches many days of the week. It is tolerable most days, but maybe it is because you have been around for so long. I am so used to you that many times I don't even notice you are there. That's not good. It really is time for you to go.

I don't want to lay in bed anymore or give up an activity because of you. I want to be able to think clearly and not have a layer of headache fog interfering with my activities.

So, dear headache, please consider this an eviction notice. This notice can't be contested. It is really time for you to go.

Your soon to be ex-host,
Faith

Tuesday, August 16, 2011

Realty and Acceptance

It has been a while since I wrote anything. I sit here wondering why that is. I think it may be because I am entering a new phase of healing. There is less focus on "being ticked off" and more focus on just relating to life. This is nice forward motion.

With this forward motion brings the reality of multiple things. There is the reality that many tasks and "to do's" in my life were on hold for months while I was acutely ill and in the first few months of treatment. Now I am back at work and it takes all of my energy to do what needs to be done in the day. There hasn't been any time or energy to deal with what didn't happen both at home and at work. This is a difficult pill to swallow...more difficult than the piles of pills on my counter top that now get ingested with ease.

Then there is the reality of this new phase of feeling "between." I haven't yet found a good word for this stage yet. I think the best analogy is to the flu. When you are in the grips of the flu with a high fever and inability to get out of bed, you don't really notice what isn't getting done in your life. You don't even mind laying in bed. Once the fever breaks and you start to come back to earth you think you can get up and do what is on "the list." Quickly you realize that you are not sick enough to be in bed, nor are you well enough to return to "business as usual." You have to pace yourself and accept what isn't getting done and do what you can.

This is precisely the phase I am in. The major difference between recovering from the flu and recovering from Chronic Lyme Disease is that you know that the flu is short term. Recovery from Lyme will happen - I am sure of that now - but how long it will take is completely unknown. I guess it is still short term when one looks at an entire life span. Some days I accept this. And some days it feels like eternity and I can't even spell the word acceptance. The "between" stage between illness and wellness seems like being suspended in limbo indefinitely.

Today seems to be one of acceptance and for that I am grateful.




Tuesday, August 9, 2011

Noticing, Accepting and Relief

This process of healing the body has definitely brought with it an increased awareness of all of it's functions. I feel like I am noticing subtle changes and patterns. With that noticing I am learning to accept what is happening and let go of some of the need to control everything. One gets more objective about life and then the hopelessness naturally decreases. It is quite a beautiful process.

In addition to the "noticing," this process of reflecting and writing is also incredibly healing. It is a chance to get clear about what is happening. From the clarity comes a sense of space. And in that space there is room for other things --- like hearing the birds, seeing the beautiful flowers and just feeling joyful for no reason.

Here is a bit of my contemplation of "noticing" yesterday morning:

I am noticing that I really am getting stronger! If I increase my Samento and Banderol on Thursday night, I feel like crap through Saturday, but I am feeling like myself again on Sunday. The time of being "sick" is getting less. And the time and feeling stronger and more alive is increasing. (An additional note...felt lousy again by Monday afternoon for no apparent reason and still with headache today. Oh well.)

I am noticing that my adrenals are no longer completely "exhausted." I don't need as much medication to wake them up anymore. And if I do take too much of a "boost" then I end up in the bathroom every 15 minutes. One tincture has been retired! This really is a momentous occasion.

I am noticing how tied in my emotional lability and various psychological neurosis are to my medication increases and subsequent die-off of the Lyme bacteria. It makes me think that all these years when I was going through "spells" it was really a flare of the Lyme Disease. For the first time in my life I feel like there is hope that I will have more steady emotions and not go through bouts of depression and anger that ravage not only myself, but also my family.

I am noticing that after days of the little buggers dying, my body feels stiff. On Sunday I could feel it in my back. It felt like toxic sludge. Some soaking in the hot tub, exercise and/or stretching seems to get it moving and the symptoms go away. It is really incredible to be able to relieve stiffness, toxic muscles and pain. At least for the last 10 years I have felt trapped by these symptoms. They have held me hostage whenever the wanted to. Now I can see them and most of the time help the shift to occur. Amazing!

I am noticing that as long as I haven't increased my medication dose, exercise actually feels good! I may be a little sore the next day in isolated spots, but I am not in massive pain everywhere. I also maintain a decent energy level the day after exercise. This is really a major milestone! If I increase my medication doses all of the "old patterns" return. On Thursday night this was so clear. I felt a little sore from yoga and swimming, but it was isolated. About an hour after I took my medicine it was as if a truck ran me down (repeatedly) and everything hurt. Being able to see this pattern so clearly - and know there is a pattern - brings tremendous relief!

I am noticing that the headaches are mild to non-existent unless I increase my medication. Then they return with a vengeance. Again, seeing the pattern helps brings tremendous relief!

I am noticing that I am moving through this with grace (most of the time). Each week I think the hard days get a little less hard and the good days are much better. Whew!


Saturday, August 6, 2011

Get stronger to feel sicker

There is an interesting dynamic in Lyme treatment, as is probably true in treatment of many illnesses. You work really hard to get stronger and feel better only to increase medication to fight the disease and then subsequently feel sick again. I have become accustomed to this but sometimes it hits harder than others.

This week was a perfect example. I got so sick from increasing my medication 4 times in 2 weeks that I had to take a week off from any dose change. I could feel my body, mind and emotions gain strength and stability every day. I was accomplishing more at work, having better memory and generally a brighter attitude. I even went swimming twice and went to a yoga class in addition to daily walks. My muscles were sore afterwards but the body didn't have a systemic break-down like I have in the past after exercising.

I spoke to my mother on Thursday after having swam about 40 yards front crawl at the pool and using the kick board for about 20 minutes. I haven't done this in years! I really felt on top of the world. I was bragging about all of my accomplishments when she spoke the truth, "You are feeling too good. It sounds like it is time to increase your dose again." CRAP! She was right and I knew it.

I went to my medication counter and did the typical routine. I prayed that all would be well and that the reaction would be minimal. The reaction could have been worse but it still was no fun. In about one hour it was as if a truck ran over me. Every muscle in my whole body hurt, my head was splitting and I felt like I was on the verge of tears. CRAP!

Really this was something to celebrate. I had gotten some much oxygen to my muscles that the bacteria were vulnerable. When I increased the medication dose it was enough to make them die. Yippy. It just really takes the wind out of your sails to plummet so far so fast. Everything was hard again. I knew it was for a purpose, but again it didn't make it easier in the moment.

The next morning I over-slept because I had stayed up too late numbing my brain watching mindless things on the computer. I was just about to get in the shower after a oh-too-short sauna when I got a call from my mother with news about a family member that was difficult to hear. I hung up the phone and proceeded to crumple. There has been so much intensity in our lives with my illness, and then my daughter's father having to leave the state for some undetermined amount of time and now this. Really I felt like I was being smothered and couldn't catch my breath. I decided there was only one thing to do. Go back to bed and watch Netflix.

Today has not been much better. Mercury in retrograde has made communication just awful. I was supposed to spend my morning in the country sipping tea with a dear friend but due to over-reaction and miscommunication I ended up....you guessed it...back in bed with the computer. This time it was Hulu.

I recognize my wallowing isn't helping. I just took my medicine and don't feel as if I am going to die. I am hoping to go on a walk. Yesterday's didn't go so well, ending in a crushing headache. But today is a new day. I can smell the yummy food on the stove. The sky is beautiful and the air is blowing in the kitchen smelling sweetly. My dear friends are back from a summer in Turkey and Italy. I look forward to seeing them. I know some chores will get done tomorrow. Certainly not everything. I need to remind myself that just because I can't get them all accomplished isn't a reason to not to do something. This is an ongoing lesson for me.

It is time to make a shift. As I remind my daughter when she is in a funk about very real things...stick to the facts. I got stronger and had a really good week. The last 2 1/2 days have been hard because the bacteria are dying and it effects the body/mind. I am starting to feel a little better and that will continue. Underneath these yucky feelings there is healing that is taking place and a body that is getting stronger.

Tonight can be a new beginning and tomorrow is a new day.




Wednesday, August 3, 2011

Smiling

My contemplation tonight is on the power of a smile. Does smiling really shift everything? Maybe. We'll see.

I went to a yoga class tonight. The theme was "smiling" on the outside and the inside. I have heard of this technique before and wondered about it. Tonight it seemed to work. Rather than worry how I would make it through my first yoga class in years, I just smiled. Sometimes it was a grin and other times it was an all out smile.

What I really wanted to do was shout, "I'm doing it! I'm moving my body! I'm strong!" My prayer is I feel the same way in the morning. It's okay if I am sore as I haven't used many of these muscles in years. But what doesn't need to happen is physical collapse from exercise. That phase is over dearest body. I hope you heard that loud and clear.

There is good reason to hope that the body will recover well from this bit of moving it around like a pretzel. When I went to the coast on Sunday night I was ridiculously under dressed. Cold has equalled pain for me for many years, and a night at the coast was often enough to send my body into the abyss for days or weeks afterwards. But on Sunday night I was just cold. You heard me right, just cold. That's it. Really that was amazing. My husband was so worried about me and I had to keep reassuring him that I was cold but fine. Wow!

That is how I will be tomorrow after a night of more exercise than I have had in ages. I will be a little sore. That's it. And my body will benefit from all this oxygen getting to places it hasn't in so long. The Lyme bacteria doesn't like oxygen. Awe, poor little bacteria will be dying. I can't say I am sad about that.

I pray my body has the strength and the power to come into balance. It will flush any bacteria out that needs to go. The kidneys will work as they need to (they seem to be overdoing it a bit the last few weeks - getting blood work to check on them tomorrow) and flush out any dead little Lymies. All is well and will be well. The body will rejuvenate and replenish as it is made to do. And I will keep smiling.....


Discouraged

I am feeling discouraged today. I have nothing witty or inspiring to say.

Today I just want to be done with this stupid Lyme disease and the treatment. I don't want to take any more pills or supplements. I don't want to have to rest in the middle of the day. I don't want to be in pain, nauseous, dizzy, feel tired or having memory issues. I don't want to feel on edge, angry or short-tempered for no reason. I don't want to loose my temper with my daughter or husband. I don't want to eat crappy food because I don't feel like cooking. I don't want to surf the Internet looking at mindless news because I am too tired and worn out for anything else. I don't want to go on little walks and take it easy on my body. I don't want to look around the house and have an anxiety attack because it is dirty and disorganized. I don't want to freak out about all the things I haven't done at home or work.

I want off this ride today. I would like a different ride. Something a little less bumpy. I would imagine this feeling to be similar to a toddler who is sick of their toys and just lays in the middle of a playroom filled with wonderful toys kicking and screaming for seemingly no reason. Unfortunately it is not socially acceptable for me to exhibit such behavior (even though I do succumb and do it occasionally).

What can I do (other than wallow in self-pity or throw a tantrum)? Maybe I can just accept that I feel tired of all of this today. I can give myself a hug and acknowledge that this process isn't easy. I may be getting stronger and healing does seem to be occurring, but it is still really hard sometimes. I know this too shall pass. I just wish it would pass right now.

(I will go look at the deck of cards by inspiring co-worker loaned me. I bet there is a card for this kind of morning.)

Monday, August 1, 2011

The hard stuff and the beauty

Getting older is an interesting thing. As we age it seems that there are more and more people around us going through very challenging life situations. People get cancer or other severe illness, spouses die, children die, parents die, loved ones go to jail, people get divorced, dreams change, careers change, etc. etc. World order and the economy are constantly on the verge of disaster. And yet the sun still rises, children laugh, and the day begins. I am contemplating today how to live in reality and also be more joyful and present with what is.

My neighbor has stage 4 ovarian cancer. Her husband has had one leg amputated (and still rides his bike to work). Before she shaved her long hippy locks she had a mohawk for about a day. Then she covered her head in henna designs. She is a vibrant, amazing lady. We were sitting on the swing in my front yard discussing our current treatment regimens and how we were faring. She made a comment that has really stuck with me. I believe I had said something about how it was hard to stay positive on the really hard days but we just had to keep putting one foot in front of the other. She mentioned that even though she and her husband have many challenges there would be so many people in the world ready to trade places with them. This really made me think. At least I have food, a shelter and I am not being shot at or living in fear every moment.

Yesterday I had a beautiful conversation with a lovely cat kennel customer who I adore. I have known him for about 10 years. He is a retired teacher and a very sweet man. I have always enjoyed chatting with he and his wife. When he said hello to me yesterday I didn't recognize him because he no longer had the beard that he had adorned his face for 40 years. But he still had his smile and positive attitude. He talked about how well he was -- other than the neuropathy in his hands, the fatigue and the impending stem cell transplant. He is walking everyday, eating well and remembering that the outcome is really not in his hands so all he can do is be okay today. We also talked about how hard it is on his wife. She is trying to hold everything together, be strong and do everything in the household that he once did. It is breaking her down and that is hard for him to watch. I could really relate to this. I have watched Terry doing the same thing for the last few months.

He asked a lot about Lyme Disease and the treatment I am going through. He had seen the movie Under Our Skin so he was familiar with the controversy about diagnosis and treatment. He also had two family members from Pennsylvania that had Lyme Disease. I told him about how I had the opportunity to take another test and if it was positive it would give me the validity to be able to shout from the rooftops about what I have been through the last 16 years. I think the reason I have the urge to do this is to educate the more conventional medical community about how important it is to thoroughly investigate why someone is sick and not just treat the symptoms. Lyme Disease is treatable. Ignoring it and not listening to the people with chronic cases is really not the answer. I get riled up just thinking about this!

All of this contemplating is good for me. Life can seem hard and harsh. It is also perfect and beautiful.

This last week was very hard for me emotionally and physically. I have been in lots of pain and my emotions were all over the map. Some days I have coped better than others. I can see how I need to be gentler on myself and remember all that is there to nurture myself. This is easier to do when the bacteria are not dying off in the brain and making me feel crazy!

Somehow I got through the week and so did my family. We took time this weekend to go to Fall Creek and also to the Coast. I spent time in my new hammock and in the garden. I went on walks and noticed that despite the physical "yucks" this week, I am still getting stronger. A kennel customer commented that I have always had dark circles under my eyes and now they were gone. I looked in the mirror and saw this to be true. Wow! I think I had forgotten what my face looked like without them.

Today is the start of a new week. May I accept what is challenging, notice beauty and be gentle on myself and those around me. 

Recipe for Magic

Being at Breitenbush Hot Springs for my birthday was just magic! There were many ingredients to this recipe that made it so lovely.


1. We decided in the car that it was a no criticism, only appreciation day. And I decided to let my daughter be however she needed to be -- grouchy, bored, happy, etc.



2. I let go of expectations to feel physically well. This turned out to be a big part of the magic of the day. Physically I was very sick but I didn't let it change my day or my mood.




3. Really took to heart this thought: There can be physical pain in the body but that does not equal suffering or sorrow. That is caused by our resistance to what is. Let go of the resistance and one can be happy and in pain. :)

4. Breitenbush River and Springs are just pure magic. She is beyond beautiful. Her smell, sound, sight. I could spend ever day soaking, listening, playing.







Monday, July 25, 2011

37 and counting

Tomorrow will mark 37 times I have ridden the cosmic orbit around the sun. That sounds so much better than saying "I'm 37."

I have come to care very little about my birthday in recent years. This year I seem to be reflecting about it more. Maybe this is because there is so much happening in my life. I'm not sure. I do know I appreciate the well wishes, prayers and the chance to pamper myself even a little.

Earlier today (after gagging on a nasty medicine) I was thinking about how sick I am of taking 15 medicines twice a day (I just counted for the first time tonight --- and this doesn't include as needed things). Then I shifted that thought to, "I am so lucky to have a condition that even has a possible treatment." That shift in thought is a great example of the intention I have for this next rotation around the sun.

I have always loved the Gandhi quotation, "Be the change you want to see in the world." I think I will make that even closer to home. "Be the shift you want to see in your life." It's really time. Let the shifting begin.

My goddess fairy sister gave me the most lovely birthday card tonight. These words she wrote sum up my intentions for this coming journey, "I am wanting one thing for you this year -- to be yourself, fully well." Fully well -- my time is here! Yippee. 

Friday, July 22, 2011

Flexibility and Fluidity

Flexibility and fluidity have never been my strengths. I want firmness. I want to know what has happened, is happening and is about to happen.

I haven't had a crushing headache for a little while and I wanted it to stay that way. I was feeling stronger and happy about my little accomplishments. I wanted that theme to continue into today. Today was a day with no commitments, sunshine and even some energy. That was the plan for today. Get the house cleaned, have free time to pamper myself and then have a date with my husband.

I spent time in the garden. The house did get clean thanks to the help of my wonderful teenage daughter. (Never mind that I have to pay her for her cleaning services) I went for a walk around the block with the dog (first time around the block in as long as I can remember). I had a yummy lunch outside. I laid in the hammock with the kitty feeling the warm sunshine on my face. But since then I have been laying in bed zoning out of re-runs because I have a mind-blowing headache. Just the pressure of my feet touching the ground is too much. It is to be expected I guess. I increased my dose of medication last night. I had been getting sick when I did this over the last month.

(Here comes the "but" and the anger.) But, this didn't happen last week when I increased my dose. This isn't supposed to happen anymore. I am suppose to have a day of feeling good and enjoying my day off -- right?

"Okay Faith....get a grip. You have a choice. You have laid in bed so your head didn't feel like it was going to explode. You are bored now and getting out the baseball bat to bloody yourself. This is not a good decision. You said the bat was retired. Get up and go check on the diabetic cat in the kennel that isn't eating, do your evening prayers and do something special for yourself in the last hour of the evening. You have a sauna and hot tub. Use it!"

Hmmm. It sounds like I should listen to that little voice. She sounded pretty powerful.

It is okay that there was a blip today. It was still a good day. Just cause' the f-ing headache returned today doesn't mean it won't leave. This is no step backward. The body is still healing. I need to just go with the flow.

I guess I can choose to go with the flow or I can kick and scream and be taken downstream anyway. I think I will choose the flow. Time to get up. I'll fake it and make it if I have to.



Thursday, July 21, 2011

SHOUTING about accomplishments

I have often found it easy to see what is not done or what I could do better. This perfectionism which leads to self-flagellation is really no longer serving me. And inevitably once we get tired of beating ourselves up with words and thoughts we turn that negative attention outward towards our loved ones.
It am ready for a change in this oh-so-old behavior patten. It is time to celebrate the improvements even when they seem ever so small.

1. I HAVE ENERGY! I no longer have to take a nap in the morning. (This is a huge accomplishment!) I used to get up, shower, do my morning meditation/prayers, take medicine, make lunches and get my daughter off to school and then I would have to lay back down for 2 hours. Now I can make it until about 2:30 p.m. without collapsing into the heated bed.

2. MY MEMORY EXISTS! My memory seems to be getting better. I am still very forgetful but at least I am not routinely forgetting what I am saying mid-sentence. There was a funny lapse of memory yesterday that is worth repeating. I had bought a container or lettuce and spinach starts at Down to Earth. I asked my daughter to get them out of the car. I couldn't remember the name "plant starts" and instead said "earthy growy things." At least I made her laugh. I find comfort in knowing my lack of memory and choice of words can be of social service to others.

3. THERE IS SPACE IN MY HEAD FOR THOUGHTS! I no longer have a crushing headache 24 hours a day that fills every corner of the head with pain leaving no space for any thinking or functioning capacity.

4. NO MORE HERXING! I don't have a fever and flu-symptoms when I take my medicine.

5. THE BACTERIA IS DYING! When I increase my dose of medication the pain is not so bad that I have to be in bed for 2 days.

6. GETTING STRONGER! I can walk to the end of the street (most days) without feeling like I need a wheelchair ride back. Next step -- a yoga class.

7. MOVING FORWARD AND SEEING IT! People see me and say, "You look so much better." At first I wanted to respond by saying, "But I feel like shit." Now I can see that I am better in many ways.

8. CALM! This week I am not having panic attacks that last all day.

9. PINK SKIN (or at least my normal olive skin tone)! My skin color is not so pale that it makes people want to call 911.

10. STRENGTH IN CONSTITUTION! I can stay upright for more than 2 hours without feeling like I am going to faint.

11. FIERY! I have enough energy to actually get mad and fired up about something (sometimes).

12. GARDENING! I can weed the garden for a few minutes before my thighs start to protest.

13. THE MEDICATION IS WORKING! I have pain in my body and a worsening of symptoms sometimes in relation to my medication dose, which shows it is working and the Lyme bacteria are dying.

14. SURFER GIRL! Instead of focusing of having nightmares about being sick the rest of my life I am visualizing being strong enough to paddle out into the ocean and ride a wave! Look out world...Faith's gonna be a surfer girl!

15. PHYSICALLY STRONG! I have a physical goal to work towards and I am extremely excited about it! I am going to cut out pictures of female surfers and post them everywhere just in case I get discouraged.

16. WORKING! I actually work 40-45 hours a week between my job as a nurse and a kitty kennel owner. I am tired in the evenings but not feeling near death.

17.  GETTING PAID! Working my regular schedule = earning my regular pay. This means I won't cry when I see my bank balance at the beginning of the month.

18. I AM HEALING! EVERY DAY IS A STEP FORWARD!

I decided to SHOUT my accomplishments. (I have been reminded of how fun this is from watching the Italian baker family on Cake Boss. Netflix in the afternoon is how I distract myself when I feel icky.) Why not shout? I'm half Italian so I have the right to shout as much as I want, even about the good stuff. Hmmm. Now I am imagining climbing to the top of a mountain SHOUTING about how strong and healthy I am. This is a lot more fun then getting out the bat to beat on oneself! I will continue to make the conscious effort to retire the bat and keep it in retirement. It's about time!












Monday, July 18, 2011

Can I have a cup of energy please?

Earlier today I felt like I had a little energy. That feeling has exited as quickly as the air releases in a balloon. Now I feel like I am carrying an extra 100 pound weight as I try to move about the house. Everything hurts.

I thought a little rest in bed with the laptop would rejuvenate me. Wrong. When am I going to learn the laptop shouldn't be my partner in bed? I think it is my attempt to "zone out." That works sometimes, but not when I am really exhausted. Truth be told, nothing works when I really exhausted and in pain. I should re-phrase that. In the past nothing has worked, but in the present there are endless possibilities.

I just got up to let the dog out and suddenly realized I had left the milk sitting in the car for the last two hours. Oops. Hope it is still good. It felt cool still. Once I let the dog out I thought I would take the trek to the mailbox and then get the milk. That journey has resulted in another rest on the couch. This time with the laptop to do a little blogging.

This would be a perfect time for a cup of strong black tea or coffee. Except I have been abstaining from those items to give the adrenals a break. Maybe the adrenals have rested long enough. That is a great idea but it seems doubtful. I could also use a nice cupcake or donut or maybe even some pie. Abstaining from those too. So boring.

Okay, I guess it is time for me to put down the laptop and to dig deep into that self-care list to find something that is rejuvenating. I'll start by ending this complaining session with something to be grateful for. Hmmm. I am grateful to have excellent hearing so I can hear the symphony of birds outside my window. They do sound delightful! I guess that is a start in the right direction.

Saturday, July 16, 2011

Surfer Girl



My childhood memories are surrounded in water. I swam in Fishing Bay (while living on Elliott's Island, MD) as early as March and I remember getting in the Atlantic Ocean at Rehoboth Beach, Delaware in April. I would stay in a pool from sun up to sun down if it was impossible to get to the beach that day. If I needed to feel my body's strength, to relax, to have fun, to be alive --- I would get in the water (especially the ocean).


Since getting sick in the mid 90's I have not been able to get into water that was not very warm unless the air temperature was over 90. I have watched my body get weaker and weaker. My time in the water has been limited to hot springs and hot tubs.


Hot water is nothing to complain about, and I am blessed to have the means to immerse in hot water whenever I want to. That said, I long for those days when I could stand in the ocean feeling strong and powerful.


Since starting the treatment program for Lyme Disease I have thought I wanted to set a physical goal to work towards, something to focus on other than how sick I feel most days. I have thought of various things -- walk a half-marathon, climb a mountain and/or go backpacking. All of that sounds great but none of it has felt like the "shining light" that I have been imagining that will keep burning and reminding me why I am going through this.

Today it came to me so very clearly. I want to learn to surf. I want to be strong enough to put on a wetsuit and paddle out into the Pacific Ocean. Now for those of you that are fearing for my life or think I have lost my mind, please know that I have a plan. My husband has surfed for most of his life. We have a wet suit and a surf board that would work for me. I would even like to travel to Mexico (never been there) and start with lessons in a bathing suit (before I have to put on the extremely thick wet suit that makes me claustrophobic). Then I can venture up to the Oregon Coast's frigid and rough waters.


To even think about being that strong is both exciting and terrifying. For now I will take baby steps. Continue to walk every day even if 10 minutes is all the energy I have. Keep doing gentle yoga at home and work up to an actual yoga class. Start dancing again. First in front of the Wii with my daughter and maybe eventually a NIA class. Then, longer endurance and a stronger core --- bike riding, swimming, core strength building exercises.

The plan is there. I just have to keep seeing and believing it. It is possible. Although some days are still really hard, I get glimpses of having a little more energy. The doctor said this would happen. "Your better will start being a lot better as you improve. The hard days won't be as hard." I look forward to this and can see it beginning to happen.

I remember being 19 years old walking home along the beach at 10:00 p.m. under a beautiful moonlit sky. The Atlantic Ocean was glistening and so inviting. I had swam it that ocean since I was a infant. I respected her and knew her so well. I remember being entranced that night and swimming by myself as others watched in amazement. I also remember swimming with dolphins at sunrise and barely escaping the razor's edge of the jetty because I didn't want to say goodbye. I remember those days and long for them. I long for the salt water in my ears. I long for the feeling of sore muscles that doesn't mean I will be incapacitated for days on end.


I am excited to explore the ocean again. This time in the cool waters of the Pacific. An ocean that I don't know in the same way I knew the Atlantic. Her fierceness will require amazing strength and trust and intuition. I have to believe in myself. It will be a journey. Definitely something to look forward to.