Transformation (and the last entry of this blog)

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

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

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

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

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

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

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

Thank you.

Turning the page

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

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

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

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

Roller coaster

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

A Window Inside

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

The long stroll

Last night I watched a video of a reality TV star giving a speech at a Lyme benefit. It was comforting and heartbreaking to watch. With limitless money, support and doctors at her disposal she still went years without a diagnosis. Even after 3 months of intensive treatment, she continues on this twisty road of unknowns when one is attempting to heal from Lyme Disease.

What struck me most about the video, oddly enough, was when she talked about her head pain and the feeling of swelling in her frontal lobe. Each time she described it, I almost wanted to scream, "That is what mine is like!" It was comforting in some way to hear someone use words to describe a pain that I call, "Aliens trying to get in or out of my skull," and what for me is really indescribable.

Lately I have been doubting my instincts and wondering if "something else" could be causing this two year debilitating head pain and feeling of brain swelling. I have been going through the Mayo clinic headache list with my regular doctor and trying "this and that" without any change. A referral to a neurologist is in the works just to make sure there is not something else causing this head pain. And, with the referral come all the doubts. Will he believe me? Will he understand? Can he help? Blah blah blah.

My angel of a Chinese medicine practitioner, aka Quinn, who for whatever reason I trust implicitly, was so gentle with this little doubting one when I saw him over the weekend. He thought seeing a neurologist just to rule out any other cause was reasonable, but reminded me that all of my symptoms and history all point to tick borne illness (Lyme and co-infections). "Looking at the whole picture," he said, "I can't imagine what else it could be." Oh Quinn, I love how he looks at the whole picture, but wonder why it is so hard for all docs to do that. I feel so grateful for him.

I may be on the slow track when it comes to healing from this disease because my body can tolerate so little treatment at a time, but I know I have someone by my side that has run this race before with others. That image reminds me of a friend's post this morning. She is recovering from a foot injury and about to run her first marathon. She mentioned how she is connected with a pacer and will be in the 12 minute mile group to make it a 26 mile stroll. That's what I am doing with Quinn, the long stroll (likely 3-5 years) toward wellness. I WILL get there!

Anniversary - oh my how things have changed

Last year at this time I was lamenting that it had been a year of constant pain in my head. The pain has not changed, but something has. The daily pain, with spikes so severe there are no words to describe them, still sits on me like an albatross. Maybe that is the difference. It may be there (attempting to weigh me down or claw into my back), but sometimes I don't really notice. I am grateful when I can mostly go about my day without giving it much attention. I do what needs to be done - the 50 pills and potions - the this and the that. And sometimes, by some miracle,  I don't lament having to do it to keep going. Sometimes, even occasionally, to achieve this distance and acceptance feels like a bit of a miracle.  Living with Lyme disease, attempting to shift this body towards health and wellness and live my life is such a dance. When I can immerse myself in the dance and not keep track so much of the data, it somehow isn't as overwhelming. Yes, March 20th marked the two year anniversary of the severe flare of Lyme disease in which my life dramatically changed. But, instead of lamenting it, I celebrated the Spring Equinox with my family. It was about new beginnings, telling stories and having fun. Somehow that is what must happen, even amongst what sometimes feel like intolerable symptoms. Again, the dance of long term illness. Grateful for even the smallest shifts in these last two years. Looking forward to more shifts toward wellness!

Managing pain before it manages me

It is 2 a.m.

I lay here writing because, yet again, I have been awakened by this pesky stomach pain that engulfs my abdomen. I think it is the 6th or 7th day in a row that I have woken with this not-so-friendly visitor, although this is the earliest. Yesterday my husband asked, "Is there any day since I have known you that something hasn't hurt?" The answer is probably not, but certainly not in the last two years. I can say with confidence that for almost 2 years I have had knock-you-on-your-ass head pain. In addition there is the not-so-much-fun cycles of stomach pain (abdominal head aches), neck pain, back pain, shoulder pain, tendon pain and hip pain....and let's not forget the nerve pain. Goodness, it's a lot really.

This is my process right now. I am in the process of accepting that this is really happening, it sucks and it doesn't seem to be going away. I hold hope that someday it will go away and I will live without pain, or certainly less pain. I would even settle for intermittent pain. This constant pain that is there all the freaking time is a drag to say the least. It wears out the adrenals, the mind and the spirit. 

I feel so much gratitude though, that for the moment I seem to be not running from the pain. Instead I have been guided to a wonderful therapist that specializes in pain management and chronic illness. In just two visits I can already feel my perspective changing. Even the small little changes make a difference. The pain doesn't go away, but my resistance and reaction seems a bit less. And really, anything that helps, even a tiny bit, is worth it right now. My pain level is almost always between 5-7 on a 1-10 scale and way too often is at the "stupid" level which I would guess is somewhere between 8-10. Ten being the extreme pain where it feels like I am passing a kidney stone or birthing a baby in the small space of my skull or I am in some wicked kind of torture chamber where an axe murderer is hacking into my brain. 

I spent a good period of time trying to ignore it, push through and tell myself this isn't so bad. Newsflash - it is "so bad." But, that doesn't mean there are not lifestyle changes and small shifts in my awareness that can make a difference. Like the good ol' remembering to breathe into the pain when it increases, and using my coping skills, and......blah blah blah. But, the reality with chronic illness/chronic pain is that making self care a priority in my life is just not optional. Wishing it wasn't happening or trying to ignore it or run away or minimize will do nothing but increase my suffering. It is happening. It sucks. And life goes on. 

That is the key. Pain is not optional currently for me, but suffering is optional. This is a phrase I have heard for some time, but it is finally resonating on a deeper level for me. Nothing that I am reading in my new book, "Managing Pain before it Manages You" by Margaret Caudill, is shocking to me. Instead, it is a series of thoughtful reminders and suggestions of how I can be introspective and mindful to ultimately manage this pain a bit better. 

The word 'manage' really seems to be the key. This word keeps popping up for me. Really it is all someone with chronic pain can do --- manage. I can see now that my efforts to beat it or run from it were valiant, but ultimately managing is the card that keeps coming up on top of the deck. And in this managing there is opportunity to regain some control of my life which has felt like it was careening down the tracks like an out of control train.  That out of control feeling then feeds so many old issues from my past that confound the problem. Add in emotional pain to the physical pain and there is really a recipe for disaster. The physical pain may not be optional, but the emotional pain is. 

I am in the process of learning to manage. I keep saying this because I tend to be all or nothing - a die hard perfectionist. Maybe if I keep reminding myself that this is a gentle process of becoming more alert and aware and not one more thing to do or achieve, that that perfectionist will settle down and not get her knickers in a knot. My life is the way it is right now. Pain has joined this party for way too long. It doesn't seem to be leaving no matter how nicely (or not so nicely) I ask. So, for now, it is about managing. Managing this pain before it manages me.