Am I allergic to the world!?!

bathroom-1,

Well, I’ve made it this far.  As I write this I am collapsed in a hard bed in a very small hotel room, air conditioning buzzing loudly, but not loudly enough to drown out the sounds of honking horns.  I keep having to fiddle around trying to turn it off, turn the temperature up. Etc. because having Lyme disease apparently means you’ll even be cold in a place where the temperature is 95* with 95% humidity.

Wow. The last 40 hours have been an absolute blur. Traveling when you have a chronic illness is not an exciting or fun experience as traveling should be.  In the last 40 hours I’ve been in four airports (mostly on the floors of them) on three planes, taken one crazy taxi ride through a city I (ignorantly) didn’t realize would be so impoverished, and now, in one hotel room where there is no warm water and I have barely left the bed for 12 hours.  I sound entitled and elitist and uncultured. But when you are sick, exhausted, and overwhelmed, cultural shock is SHOCKING.  All I want is the familiar right now.  My bed, my cats, a fire going, my essential oils diffusing, healthy food cooking, a warm shower, peppermint oil for my headache, quietness.

I had two eight hour layovers in airports where mostly everyone spoke Spanish.  I spent most of the time on the floor, in and out and consciousness.  There was nothing I could eat…soda, cookies, pastries, chips were all that could be found and the snacks I could bring were things my system doesn’t do well with (you can’t exactly pack grass-fed meat and vegetables in your suitcase!). Each airport had store after store selling fragrance, and the air was saturated with it.  Each stall in the bathroom had individual air ‘freshening’ machines dispersing sick chemical scents.  It seemed the bathrooms were always being cleaned with bleach or ammonia.  The noise, the heat and then the overly air conditioned areas.  The lack of sleep. The confusion (I speak very little Spanish and have never traveled internationally before- immigration, customs, money exchange- all new to me).  Even with my strong and independent nature, all of this has been just too much for my little Lyme-infected, chemically-sensitive body to take.  By the third airport I was an absolute mess.  I felt like I couldn’t breathe, I was nauseous and in a ton of pain and shaking.  I ended up on the bathroom floor breathing in those disgusting chemical fragrance fumes and bleach and ammonia and crying because everything hurt so much.  I threw up and had to drag myself off the bathroom floor to make my last plane where I spent the duration of the flight curled up in a little incoherent ball, largely unaware of everything around me, all I could feel was pain and nausea.

I stumbled off that plane into the humid and hot city of Iquitos, Peru.  I managed to get a taxi and the drive through the city was intense.  No organization to the traffic, dogs and trash everywhere, honking, tons of pollution from the motorbikes, I couldn’t breathe.  My head was pounding.  I made it to the hotel and they were so nice, allowing me to check in hours early. But once again, the space reeked of chemical air freshener.  As I was checking in I had to run to the lobby bathroom to throw up 😦  I made it up to my room, which was filled once again with chemical fragrance.  I threw up again.  Took a shower and there is no warm water, so I was freezing.  I got out and my teeth were literally chattering and I was shaking all over. I climbed into the bed and fell asleep.  Woke up to my period starting and severe cramps.  Tired running the shower for a long time, but it never got even close to warm. Now I’m back in bed, hungry but still nauseous, just sick sick sick in every way, all over. Everything hurts.

There’s no way I’m leaving the hotel as 1. I’m sick, 2. I’m a white female and look like I’m five and don’t speak the language and 3. 70% of the population in this city is considered to be living in extreme poverty and I had three people on the plane tell me it is not safe for me to travel alone here (I have since realized that I totally can wander the streets there just fine, and I did at the end of my trip!)

I am sitting here, in the darkness, glow of my phone as I type this, noisy streets outside, and wondering if this was really the best idea.   I’ve always wanted to travel and experience other cultures and other places, I’m open minded and well educated and aware that the majority of the world does not enjoy even close to all the luxuries  taken for granted in the US – clean water, paved streets, access to healthy food…but being in a foreign developing country when you are sick and alone and just not ideal.

So, why am I here?  I’m here to heal in ways, I hope. I wanted a radical shift in perspective and environment, and so far I’ve gotten it, just not in a positive sense. Tomorrow I go to a retreat center in the jungle where I’m hoping the energy of this entire journey so far will shift.

At the moment though I just feel disoriented, confused, sick and alone.  The part of me that would normally be excited by the novelty and adventure of all this, the part of me that could handle airport food and not having all the luxuries I’m used to (and I know I have been capable, I’ve backpacked in the middle of nowhere for weeks and am not someone who is unable to adapt, I prefer simple, basic living, am a minimalist- but now I’m wondering if even that preference is a luxury) has really disappeared with this illness.

I “need” access to healthy organic food I need access to a bunch of supplements I need access to safety and quiet I need access to so many things now that I’m sick (do I truly NEED?)..otherwise I fall apart and get sicker.. So..what do people who live here do if they become sick? How are they all not sick? With all the chemicals and toxic food.  Are many of them sick but just functioning? Is being sick somehow a choice? Cultural? Is being sick and thinking about it, seeing doctors, treating it, letting it define you somehow a luxury? AM I ESSENTIALLY ALLERGIC TO THE WORLD!?!!!!!”;'(-&?#($!”!©[®{¢{•×•Π!!!!!! I’m so f*cking confused !!!!

At least my migraine has subsided a bit.  

Back to sleep I go, eye mask and all, trying to black out all the confusion.

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No one wants to be around a sick person

sickboring This post may be a bit victim-y, but oh well.  No one wants to be around a sick person.  You learn this very quickly when you become ill.  I mean, I’m sick and evendon’t want to be around other people who are chronically ill.  I considered going to a Lyme-support group (and I still may), but then I thought of the last time I interacted with someone who also had Lyme disease, and it left me feeling even worse.  I absolutely felt for the woman, she had been through so much, but talking with her, I couldn’t wait to get away. I’m trying to stay hopeful, and the reality is that the energy of illness is, well, depressing. Let’s just say it.  I even want to get away from myself! sick It is one thing to be around someone who has a cold, or the flu.  You may even feel inspired to make them chicken soup and wrap them up in blankets!  Perhaps they’d like a warm cup of tea?  It is completely another to be around someone who has a chronic illness- and, those of us suffering with such a thing are hyper-aware of this. You notice how people’s reactions change.  How people slowly fade away.  And, it isn’t entirely their fault.  I think a lot of us push people away, or isolate to such a degree that we lose connections- they are just as so hard to maintain when mustering up the energy for a simple phone call with an old friend seems as difficult as climbing Everest.  You have 20 food allergies, so of course you can’t meet for dinner.  You can’t consume alcohol or caffeine, so no thanks to meeting for drinks.  Go see a movie?  Crowds give me anxiety and the lighting hurts my eyes.  Go for a hike?  Well, are you willing to carry me the entire way after 1/4th of a mile?  Kayaking? I’m assuming tandem and you’ll do you all the paddling?  Or, the fun fact that with Lyme disease our neurotransmitters are often all sorts of f*cked up, especially dopamine, so we can experience a decrease in the pleasure typically associated with being social.  Sigh.  The list goes on. And, when your illness is largely invisible, people don’t understand why you can’t be just like you were before getting sick. And why can our illness be so invisible?  It may be that we look ‘normal,’ but I think there is more than it to that.  I think we do our very best to act normal, to present ourselves as functioning and fine, because it is the only way we can get by in a society that stigmatizes illness.  People get uncomfortable when we ‘show’ that we are sick.  They feel some sense of responsibility, or fear, or a myriad of other things that make them just want to turn away.  45a6e1437a1dadc6535fcffe367159afWhat everyone dealing with chronic illness needs, more than ANYTHING, is a strong support system.  People who do their best to understand and help, people who won’t back away.  People who will listen and ask how you are REALLY doing, and offer to buy you groceries when you can’t get out of bed. cat People who won’t constantly tell you stay positive, or that there is a lesson in all of this, or that, if you just meditated more or got out more or ate this or did that.  Who aren’t offended when you blabber on about your symptoms and your fears. People who let you FEEL and work through things and SUPPORT you every step of the way. It’s not that we need to wallow in our sadness all the time, or find people who allow us to exist in a victim mentality- it is just simply that we need people who respect our experience instead of compound the issue by disappearing on us. Can you tell I have personal experience with this?  I feel like very slowly, person by person, I have essentially been abandoned since becoming sick.  People stop calling, stop checking in.  No one ever wants to talk about the fact that I am sick.  They want to dance around it and pretend it isn’t happening.  And that is for their comfort, not mine. I was bitter about this for a long time, and, obviously, I still am to a degree.  But as I find myself coming more into a place of acceptance, I’m realize that so much of this journey through illness is something I have to do on my own.  I need to go inside, connect, fight, travel through this, in many ways, alone… Image result for some walks you have to take alone ….Or….well, in my case, I suppose with cats 🙂

Well, I’m still sick, and now I look like it too..

I think I last posted after Christmas- I had just induced a massive herx via essential oil enema (very sad) and was overwhelmed by cat pee and an opossum roommate. Well, I must be a glutton for punishment, because I decided to go back to school full force (taking 15 units) at a campus an hour away from where I live, as well as move into a new place during the first week of classes.

The last few months have been an absolute blur.  I’ve realized recently that my current place has mold, so I think that may have a lot to do with why I am struggling so much health wise. In the midst of driving to school, trying to work taking care of a baby (who is adorable, but one of those ones you hear stories about, the kind who NEVER sleep), trying to actually get my brain to function (cognitively, I feel like I’m brain dead! What’s that word again? you know..the word for…oh…you know, it’s yellow and you eat it…I think it is yellow..wait, what does yellow look like? Oh, yes, a banana)….. getting molded, getting glutened….in the midst of it all… well..In the midst of it all I have not been doing a proper job of taking care of myself or keeping up with my treatment.

HELLO how I got sick in the first place all over again!  I don’t know why I push myself so much, when I have absolutely zero energy and resources.  Will I ever get better if I don’t get serious and commit to tackle this? Part of the problem, is I seem to be better able to handle all the random symptoms- brain fog, dizziness, rapid heartbeat, anxiety, depression, blurred vision, headaches etc- than I am able to handle the herxes.  When I herx, holy shit, I cannot take it- it is SO, so bad. My most recent herx, when I decided to seriously take the essential oils again, brought me to the point of being suicidal. Very scary, and not a place I ever want to be in again.

Another part of the problem, is I feel really lost in how to treat it.  I do still feel really good about the essential oil protocols, but I had my genetics analyzed (through 23&me and then run through genetic genie, and then my doctor had a look) and I have so much more going on than just the MTHFR mutations.  This adds layers to my confusion…sort of like, which came first, the chicken or the egg?  Well, my genetic mutations came first, then trauma, then poor nutrition, then Giardia, then Celiac, then Lyme, then mold…. If I have learned one thing in my hours of reading and watching videos and researching Lyme and genetics and mold and autoimmune disease, it is that the Lyme is a SYMPTOM of much, much deeper problems, and just killing off the Lyme is NOT enough.  Furthermore, it can be detrimental to kill the lyme before addressing things such as correcting your detox pathways and immune deficiency. What the f*ck…I just want clear answers and a clear plan.

Nothing about this is clear. Yet, in some strange way it is.  After I hit bottom- I SERIOUSLY considered suicide- not just suicidal idealization, which I have had on and off since I was young- this was actually planning to do it- something in me shifted.  I had a panic attack, stayed up all night and came across a documentary called The Sacred Science (I’m posting it below)-Watching it I proceeded to cry like a crazy person, and then I decided, either I’m going to Peru to do this or I’m going to end up dying…sounds dramatic, but…I just NEEDED something different, a plan, some hope- I knew I needed a radical change in environment and in perspective.  Since that night, something in me has changed- I think I finally broke and- and I was okay with that.  I’ve come to a much more accepting place.  I think so much of me was in denial, confused, lost, scared- I still feel all those things, but…I recognize them and I allow them and work through them to the greatest degree possible.

So, I’ve booked a ticket to Peru 🙂  30 days, in the Amazon- at a retreat center, where I will be doing Ayahausca and San Pedro and…well, who knows what will happen. Given the fact that I live in one of the most expensive places on the planet-absolute bullshit the cost of living, I have no idea how anyone does it- it will cost me the same amount to fly to Peru and do the retreat for 30 days and it would for me to stay here in Santa Cruz for a month.  I’m subletting my place, and moving my cats to my moms.  Honestly, I love my cats..but I am super happy to get a full 30 days of not being woken up multiple times by them (did I mention one grew up in a homeless camp with heroin addicts and has PTSD and anxiety and hates when I sleep?!?)  And I am also super excited not to come home to multiple dead, and alive, rodents, snakes and lizards.  Yesterday my cat brought in three mice in the span of 2 hours.  My life.

So- my plan is to continue doing coffee enemas (I credit these with keeping me functional through this semester) taking supportive supplements like turmeric, red root, food-based vitamin c, krill oil and probiotics- while intermittently taking a few essential oils (but nothing crazy to induce a herx), until I leave for Peru (which is in 3 weeks!!!) (The answer is PURE LIFE ENEMA COFFEE!!! http://www.purelifeenema.com/) When I am there, I am just going to go with it and see what comes.  I deeply feel that a large part of why I am so ill has to do with early trauma in my life, and then continual stress.  Trauma leads to adrenal burnout leads to negative gene expression.  Genetic mutations lead to poor immune function leads to allergies and leaky gut.  Undiagnosed Celiac leads to further immune suppression, etc etc…hello mold toxicity, hello lyme….

It is such a complicated matrix…a crazy puzzle with mystery pieces and I am trying to put it together to figure out how I got here.  But, I’m tired of all the thinking.  Tired of the confusion.  Tired of the alienation and derealization and depersonalization.  I need to get out of all this cerebral thinking and into my heart and body and back to my soul.  Hence, the ayahausca retreat….. I will literally probably almost die (my total travel time getting there is 27 hours) just trying to get there…but you know, what can you do?

You have (that we know of) this one life…and it is flying by…I want to change the trajectory..dig in, find out more.  It doesn’t mean rejecting being sick, or denying it, it means realizing there are a million layers and my identity is not soley being ill- this illness is an expression of something, and I am realizing i need to learn how to accept it, even welcome it, and integrate it…It sounds cheesy, but I think it may be in some ways actually saving my life.  I have always had extremely self-destructive tendencies, and an inability to connect with myself and care for myself. With Lyme, I’ve had to get into a routine, I’ve had to set boundaries, I’ve had to get clear on what I want and need, I’ve had to really look at myself and my life so far…. because, if I don’t do these things, I WILL die, that is no exaggeration.

Obviously, I am still overdoing it, not making all the ‘best’ or ‘right’ decisions- but I’m aware and I’m consciously working to change. I COULD do without the looking like I’m dying part of the equation though.  I used to hear, from those who knew I was ill, the standard, “but you don’t look sick.”  And, from people who didn’t know I was ill, that I looked incredibly healthy, what was my secret?   And,  Up until fairly recently- I looked like this:

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Then, right after finding out I had Lyme, I looked like this: I had a breakdown and cut my hair (WHY!!!?!?! WHYYYYY?!!?!? it makes no sense to make yourself look bad when you already feel bad!!!

I still looked relatively healthy though…. Well…boy…I never knew how radically ones looks could change…I have always looked relatively the same..no major changes over the years….until NOW.

Recent picture:  IMG_20150331_153309 Note- That is a heart monitor on my chest.  My sister had lyme and it attacked her heart and caused a blockage, resulting in stroke and needing emergency open-heart surgery.  The Dr’s told her she may not make it out of surgery alive.  So, when my heart starting doing crazy things, like…oh, skipping beats, racing, fluttering, etc etc, I immediately went to UCSF and then had to wear this thing on my chest for 2 weeks.  I actually kind of ‘enjoyed it,’ because I felt like my teachers thought I wasn’t nearly as sick as I really am- and having this on my chest gave me at least some validity…still waiting on the results… Anyways, I have steadily lost weight.  When I first saw my doctor, I was at least 115lbs.  At the heart doctor, the scale showed 103, a weight I can’t even fathom because I can’t believe I could lose that much in such a short time, while making virtually no changes dietary wise- to me, anything even close to 100 is a scary number that represents malnutrition.

I don’t feel like I recognize my face anymore. I used to have full, rosy cheeks, and now they are sullen.  My skin used to glow, and now I feel like I’m constantly breaking out, which is an absolute insult considering that fact that I am guzzling green juice and avoiding sugar like its the plague!  I used to feel like I looked pleasant, pretty, healthy… Now, I feel incredibly unattractive most of the time, and like I have no idea who the face in the mirror starring back at me belongs to. And really, it isn’t about being superficial (though, feeling attractive IS nice), it is much more about the loss of identity that comes with this disease.  The lack of recognizing yourself on the outside, is representative also of no longer recognizing yourself on the inside.  The question of WHO AM I? comes up more and more for me these days.

But you know, I’m less worried about this all that I was at the start.  I’m learning and I’m growing through this.  It is tempting to believe I would be in such better places if I just weren’t sick.  But I don’t believe I was going anywhere wonderful fast. There were too many things I hadn’t yet looked at, hadn’t worked to heal, hadn’t come to face.  So, I’m taking this day by day, and searching for the lessons, ebbing and flowing, learning how to swim 🙂 tumblr_mmbv73quvk1rnvzfwo1_500  img_4219