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.

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!

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.

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.

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

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.

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!

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.

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.)

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.