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 even I don’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! 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. What 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. 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… ….Or….well, in my case, I suppose with cats 🙂
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:
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: 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 🙂
I’ve been in a daze these last few weeks. Confused, tired, feeling out of my body and out of my mind- yet, still stuck in the painfulness of this all, that part, I seem to be totally present in my body for. I just completed 2 weeks of taking a doTERRA product called Gx Assist. It contains essential oils of Oregano,Melaleuca, Lemon, Lemongrass, Peppermint, and Thyme paired with another doTERRA product, DDR Prime which contains Frankincense Resin, Wild Orange Peel, Lemongrass Leaf, Thyme Leaf, Clove Bud, Summer Savory Plant, and Niaouli Leaf essential oils.On top of that I’ve been using other essential oils such as frankincense, lemon, myrhh, vetiver, and more both internally and externally (topically and aromatically). I’ve also started doing weekly detox foot baths, infrared saunas, coffee enemas, and have started taking cholestyromine (to bind and remove mold toxins). On the advice of a detox specialist I know, I tried doing an enema using a few drops of frankincense and lemon oil. I did this on Christmas morning. I had no real plans, coming from a dysfunctional family, gatherings of relatives are something to be avoided. My sister avoids them as well, so we had decided to just make dinner and perhaps go for a walk at her house later that day. Anyways, I did the enema and after that, all hell broke loose. I had already been feeling pretty crappy, and the night before, wanting a treat, had made an AIP legal dessert but apparently all it takes in one spec of maple syrup to set my body on the inflammation highway 😡 So the point is I was already feeling crummy and the enema, instead of making feel better, triggered what I believe to be a massive herx. I dragged myself to my sister’s and collapsed. A headache began to come on, and I had severe indigestion (something that rarely happens since going AIP) and felt like my head was stuffed with cotton. I went home and passed out…I had to drag myself through yesterday because I had things to do but it was incredibly hard and by the afternoon I was immobilized and in some of the worst pain of my life- extreme migraine, nausea, hot flashes, everything hurt… Today I woke up and was still in a massive amount of pain. I struggled to get up and lay in the shower. I tried to feed myself a bit, raspberries and fizzy water with lime since the nausea was so bad. My head felt like someone was drilling into it while simultaneously pounding with a hammer. I lay down and was shaking and just felt..so, so sooooo bad. The pain was overwhelming. The kind of pain where if I had to be in it for much more than a few days I would likely choose to off myself. I got up and ended up throwing up a few times..which sucked, but helped me to feel a bit better. Fell asleep again. Woke up in pain. Into the shower again. Used peppermint essential oil. Did a coffee enema which offered immediate relief. With the tiny bit of a break in pain, I dragged myself to the store to get a smoothie, a banana, some green tea (the caffeine helps), and some epsom salts. I then dragged (like, literally dragging my feet) to a nearby place that rents out soaking tubs (since I do not have a tub in my place, which SUCKS as taking a tub is one of the only things that ever makes me feel better). I sat in the tub, used some menthol and mint oils…. On my way home stopped at the natural foods store again. Got ginger, and then eyed the mochi (it’s this weird pounded rice that you bake, and it puffs up). I decided to get some. I have been on the autoimmune paleo diet for awhile now, and have been grain free even longer- but I just desperately wanted the rice. I came home, felt like I was going to die again, baked the mochi, ate some, and now…suddenly, right after, feel infinitely better! I’m not sure what that means. It might just be that all the detox stuff I was taking, the enema, the bath etc finally kicked in. Or, it could mean I really needed a dense plain simple carbohydrate to soak everything up… I don’t know. As I sit here typing this, I’ve realized it smells a bit like cat pee (a smell I’ve sadly become somewhat immune to, so it probably REALLY smells like cat pee). This means, that, despite keeping my couch covered with a plastic sheet, Cub (pictured below), found some time and some way to pee somewhere on it. UGH. It also means that I will have to haul myself and the giant blanket I have covering the couch to the laundromat tomorrow (it doesn’t fit in my washer here) and buy another giant container of urine odor remover from the pet store, and pay $7 to wash it! Cub has always had peeing issues, since I got him as a tiny kitten (It was much cuter back then though) and he’s been checked out multiple times by a vet (let’s not even get into the amount of money I have spent on this little guy) and has always been determined to be healthy. The vets like to say he is an ‘anxious cat’ (which makes me wonder where I went wrong in my parenting) and has an easily aggravated bladder when stressed. UGH. Anyways, since moving to my current place, he has been apparently especially stressed since there are multiple neighborhood cats (including three males right next door!) and he is constantly getting in fights. So, the peeing has been happening pretty frequently. Seemingly anywhere is fair game. The couch, the floor mats, the bed, and..and ME. In the last two weeks I’ve been peed on about 6 times, including three nights in a row. I live in a studio, so there is no way to ban him from the bedroom. As I mentioned earlier, my comforters do not fit in my washer here so each time it happens it entails me getting up at 3am, changing the entire bed, throwing the dirty stuff outside, then the next day trekking to the laundry mat. In short, it is EXHAUSTING and STRESSFUL and not something a person with chronic illness should be dealing with!!! I actually think dealing with it over the last seven years has contributed significantly to my now confused and overwhelmed immune system (I’ve had to throw away couches and mattresses, you get the idea)… The vet has recommended putting him on kitty prozac, and I’ve held out for 6 years…but, I’m seriously starting to consider it….but, being so anti-pharmaceutical I have instead ordered about 20 different natural calming aids in a desperate hope they will help… 😦 So, the peeing has been stressful. Then, my job, which was perfect- good pay, flexible part-time hours, caring for a little baby- just up and ended. The parents were having issues so the mom decided to move back to her native country. This was stressful because, while I am SO fortunate to have financial support right now, I still need to work to cover all the ‘extras.’ Like $175 per session IV treatments, detox foot baths, saunas, supplements, oils, etc… there are endless extras (which are really necessities if you want to get better) when you have Lyme. The Igenix test I just did for co-infections was $915! And I need yet another doctor’s appointment….I mean, I’ve been thinking of all the supplements I could use, all the different detox machines etc and I could easily spend $20,000 tomorrow on everything I want/need! (Say a rife machine!!! GRRRR I want one!) But, the biggest bummer about that job ending was it was in a NON-MOLDY house. Everywhere here in Santa Cruz seems to be moldy. I tried going to a meet-up group focused on healing- well, it was in a moldy building. I’ve been trying to find another place to live because I can’t stay where I’m at much longer, every place, MOLDY! I went and looked at a place that was PERFECT but, there was mold (and let’s not even go into the issue that there are ticks everywhere here so that knocks a ton of places off my list since my cats would bring in ticks) Trying to find new babysitting jobs- ALL MOLDY! Trying to date people, all live in moldy houses! Some even have moldy cars! Oh yah, and I broke up with my boyfriend 😦 I’m dating someone new already, and seeing a few other people..because, I tend to be like that. I really enjoy sex…or…I should now say USED to. Sex-drive when you have a crazy illness like lyme is a tricky thing as I’m discovering…I have always had a pretty high sex-drive. But since becoming REALLY ill, and more- KNOWING for a fact that I am ill...it’s been hard to feel sexy. My doctor ‘warned’ me that I would find myself attracted other people with lyme and to moldy places and places where lyme is prevalent. I sort of gave him a funny look, but he was like- TRUST ME, I know (he had Lyme himself). Well, sure enough the guy that I am dating is from CONNETICUT. When I finally told him about having Lyme (it took me a bit because..I just don’t like to tell people, I’ll admit I have mold allergies, celiac disease, etc, but lyme is a hard one for me…) he said, “oh yah? Me too..well, I had it once. I got a rash and immediately went on antibiotics, but I don’t have it anymore.” Well, from all my research and reading it is highly likely that he does have it! And now I am freaking out that maybe I have reinfected him, or double infected myself…but I haven’t brought it up yet
Also, I find it is so hard to be vulnerable, to give of myself, to enter into relationships of any kind, but especially intimate ones. It is so hard because…I don’t feel whole, complete..I feel sick and lost and confused and not in control. Like I don’t know who I am or what is going to happen to me. How do you enter into a relationship when you have so little to give because every ounce of your strength and energy goes to just making it through the day? They want to go go out, to DO things, hang out with friends. I just want to curl up in a ball and sleep. Yet, you CANNOT get through this, through life, alone. Connection is a necessity. But, I feel like my isolation is a survival mechanism. Tricky trickiness.
Now let’s tack on the invasive animals. First, there are the never-ending ants. NEVER-ENDING. I hate killing them, but they just won’t stop. It’s been a month and just when I think I’ve gotten rid of them, they reappear in triple the numbers! Next, there’s Huxley. Huxley is an opossum, who showed up at least two months ago now. I was sitting, minding my own business, and then suddenly I see him waddle across the room, past the cats, to the food bowl like he owned the place! I managed to get him outside and the next day called an opossum rescue lady and she told me to continue feeding him, but just to put the food bowl outside, and that he would eventually move on. Worst advice ever! He has continued trying to move in and there have been nights where I haven’t been able to get him back outside and he spends the night. EXHAUSTING. I’ve finally devised a blockade for the sliding glass door that he doesn’t seem to be able to get over but that my cats can. Then, and I do believe she falls in the category of invasive creatures, is the woman living in the front house. She is OCD, likely border-line personality disorder, and she hates me. I’m not sure why. I’m am the nicest, quietest person. But from the moment she met me she has hated me. As a matter of fact, the first thing she said to me was, “You don’t look sick” Accusatory tone, big frown, arms crossed. And, “I hope you plan on being extremely quiet.” Etc Etc. She finds crazy little issues, like me having lights on inside MY OWN HOUSE with curtains drawn at night to be disrupting her sleep and my presence here is “making her sick.” Or, me using water in my OWN HOUSE at 7pm is “too loud.” The list is endless. She NEVER leaves her house. She is definitely mentally ill and massively anxious which doesn’t help my state! About a month ago she came back and verbally assaulted me and accused me of not really being sick. What I find interesting, is she really lost it for the first time when my boyfriend (well, now ex) came into town to visit. She saw us together and just freaked out. Jealously? Who knows, but definitely INSANITY. Luckily she has received notice, and I’m just praying nothing else crazy happens before she leaves. So-there we have it, in a nut shell. Mold, herxes, cat pee, opossums living inside my house (and also peeing), break-ups, weird sexual changes, and a crazy person who believes I’m faking my illness and ruining her life! SIGH. Also, I’m finding that I feel SO much worse since starting treatment for the mold and Lyme than I ever did before. I’m hoping it is part of that whole ‘you’ll feel worse before you feel better’ deal. I’m just wondering, when the feel better part will appear….