How It Feels Being a Mystery Case with Invisible Illness
*Let the record state that I’m publishing this on October 23, 2019. If you are reading this further than a week after that date, I can guarantee you I am at a very different point in my journey, so please keep that in mind.*
This photo was from last week, after I hit another breaking point. I was trying to go from task to task and do all the things like nothing was wrong, but I just broke down crying. So I surrendered, sat on the floor, cried for 3 hours, and felt some peace for a bit. Even though I really wished I had taken my mascara off beforehand.
I apologize in advance for the length of this post, but I think it’s time we have a heart-to-heart, and I need plenty of space to bare my soul. I know that those of you who have been curious about this and those of you who are going through something similar will appreciate a full explanation, even if you don’t read this all at once.
This should really be titled, “WTF IS WRONG WITH ME? A Short Novel.”
Why It Took Me So Long to Say This
This took me so long to post because I was waiting for the right time, which, of course, does not exist. I was waiting for clear answers about what was going on before I explained things to everyone, in an attempt to avoid confusion and extra questions. Sometimes it gets complicated when your life is public on multiple platforms, and I thought it would be easiest for me if I waited until I had a clear explanation in order to minimize the questions. Things have been very emotional for me recently (clearly), and I have had zero energy to deal with other people’s opinions. It’s hard to explain things to people when you don’t even understand it yourself.
I am pretty much an open book about my life, but I’ve learned that there are some things I need to wait to share until after I’ve worked through them myself. This allows me to go through the process with more clarity, avoid extra confusion from outsiders, and minimize comments 5 years later from people thinking I’m still going through whatever I wrote about (I still get emails from people asking me how I’m feeling on my Candida protocol from 2 years ago…).
Sometimes I also wait to share things because I have no interest in pity or suggestions. I don’t feel sorry for myself, and it only makes me feel worse if I feel like anyone is pitying me. I think anyone who struggles with invisible illness just wants understanding and a listening ear, which is far different than pity. I appreciate compassion, but I don’t need pity. I’m a total badass. 😉
And I know it might sound harsh, but sharing about my life does not mean I’m asking for suggestions. I ask for advice when I want it and need it. It can be very overwhelming to receive messages from strangers saying you “should” be doing this and that, when that person really only knows about 5% of your situation and you’re already going through a million different options in your own head. I know people want to help, and sometimes they are very helpful, but people also tend to project their own experiences onto others, which is not helpful.
Most importantly, I understand my situation better than anyone else, as do the other health experts I communicate with. I’m very fortunate to have access to many of the top health experts and functional doctors in the country because of my job and connections. Trust me, I have consulted with many people about my case. I also have a lot of experience with many different types of chronic illness and stealth infections as a practitioner myself. Many of my clients also have more complicated cases and have been dubbed the “mystery patient” by their doctors.
The Background History
For purposes of clarity, it’s important for me to explain a bit about my history. I’ve told my story many times, but here’s a recap. I struggled with severe digestive issues and mental health issues throughout my entire life, constantly in mental and physical pain. When I was a sophomore in college, my digestion pretty much stopped working. I found out I had Candida overgrowth, but I also dropped a lot of weight very quickly because of “IBS” (which is a symptom, not a diagnosis). I lost close to 50 pounds in a few months. At my lowest, I weighed 73 pounds. The doctors told me I could die any day. They did not believe I was eating food (for a few months, I was eating 8,000-10,000 calories a day and still dropping weight). I was scared out of my mind and felt helpless and suicidal. It was a very dark time. I was seeing top doctors in L.A., and people gave me bullshit diagnoses, didn’t believe me, tried to send me to treatment for anorexia, or told me they couldn’t help me. I dropped out of school to deal with it. I decided to fight for myself, research my ass off, and pull myself out if it. And I did. My therapist and nutritionist were the two professionals who really had my back, and I am forever grateful. That experience taught me a lot, including the very important lesson that sometimes the “experts” can’t help, and no one was more invested in my health than I was. I reached a stable weight and was able to go back to college. Because I looked “healthy” again, everyone thought everything was fine.
After that, I found an amazing functional medicine doctor who ran a ton of tests (many of which I had already run, but were previously misinterpreted), and we discovered I had SIBO and a few other bacterial overgrowths. We treated those, and I started to feel better. Then I started to feel worse again. Over the next few years, it was an endless cycle of finding bacterial overgrowths / yeast, clearing them, and then having them come back. I had Candida multiple times, SIBO multiple times, a number of other bacterial overgrowths, and 3 parasites. Then I suspected I had Hydrogen Sulfide SIBO. I also had amenorrhea for four years, and my hormones were in the post-menopausal range. I realized my CBS mutation was acting up (I also have MTHFR and COMT mutations), so I had to do a low-sulfur protocol for that. I found out I had heavy metals toxicity, got rid of it (apparently), and then when I tested again… it was back. Then I found out I had mold illness. I was exposed in my home growing up, at my old boss’s apartment, and at my (then) current apartment. It all started to make sense. The mold and heavy metals were really the root cause of everything, and why I kept having problem after problem with my gut.
That was what it all said on paper, but this took an emotional toll on me that I tried to ignore for a long time. It was just how my life was, so I tried to move forward. You can’t spend every day complaining – things don’t go away overnight. I learned to live with the physical pain and discomfort. I was emotionally exhausted from having to take 20-60 supplements everyday, being on elimination diet after elimination diet (I have done some VERY intense elimination protocols), and dealing with the nausea, dizziness, stomach cramps, fatigue, brain fog, and everything in between. I was tired of feeling like a burden to everyone around me. I didn’t know how much more my bank account could take. But I was not going to let it tear me down. I was going to get through it. With each protocol, I told myself this would be my last one. This had to be it.
After I did my CBS protocol and started detoxing from metals and mold, I was convinced that really was going to be the last protocol I would ever have to do. I was finally getting to the root cause, after years. Around that time, my neurological symptoms had become pretty debilitating, and I was scared to live by myself. I would forget sentences I had heard minutes before. I forgot to close my door when I went to the store. I left the burner on. I kept locking myself out of my apartment. I was so slow, mentally. I couldn’t remember anything. I felt like a shell of myself that I did not recognize. I was so frustrated with my foggy brain. I’m used to being very sharp and quick. My vision was getting blurry again. I felt stressed out and alone, and I needed to get out of L.A. So I moved as soon as I could. I got out of my moldy apartment that was infested with bugs that were definitely biting me (do not even ask – it was traumatizing), and I landed in San Diego.
I admit that during the move I got lazier with my mold protocol than I should have been. I continued taking my supplements, but I wasn’t focusing on all of the forms of detox that I needed to be. I was pretty much only doing castor oil packs for a few months as extra detox support beyond my supplements. But I was so damn exhausted and confused with my health, work, my relationships, and life in general.
When Things Got Better, and Then Worse
The first few months after I moved to San Diego, I felt better than I had in a long time. When I got out of my moldy LA apartment and focused on Reiki and brain retraining, my brain was clear, I had much more energy, and I was able to tolerate more foods than I ever had before. I felt like things were finally turning around. But as time progressed and I stopped keeping up with everything, I started going backwards. When I first started energy healing, I hadn’t learned enough about self-protection, and I was holding onto the illnesses and negative energy from the people I was working with, which I’m sure played a role. (If you’re an energy healer, please learn to protect yourself before working on others!) I’m not totally sure when exactly things got much worse, because it crept up on me so slowly. I honestly didn’t even realize how bad things were until a few months ago when I slammed a book down on the floor and literally said out loud, “I CANNOT FUCKING LIVE LIKE THIS ANYMORE!” At that point, I thought, Who am I right now?! What is happening to me?!
In the last 5 years, I have never completely stopped consulting with different doctors / health experts about my case. I’ve seen FMDs, naturopaths, Chinese medicine doctors, Western medicine doctors, energy healers of all types, psychics, clinical researchers – you name it. I’ve gone the gut route, the liver route, the detox route, the trauma route, the nervous system route…There are always more things to try, but I’ve tried a lot of damn things. And I find it really unbelievable that my body is this difficult to calm down. Some things work for a short period of time, or they fix symptoms – but then something new comes back. It scares me that I have always been the mystery case. If all of these experts I talk to can’t figure things out, if we can’t figure it out together, who the hell can?! But I run into the same issues again and again – either I understand things more than the practitioner I’m talking to, they don’t have any new suggestions, they tell me they can’t help me, or they tell me it’s in my head.
These last few months have felt like deja vu from when I was 20 years old, seeing doctor after doctor, being told there was nothing to be done and that I was making it all up.
Although, at least back then people took me a little more seriously because I looked horribly sick at 73 pounds. When you look “normal,” it’s easier to be dismissed.
This recent situation lit a fire under my ass that was honestly quite needed. It sparked my creativity again, and the pain and struggle have been a source of inspiration, oddly enough. It was a mixture of anger, compassion, gratitude, confusion, and clarity all at once. It was humbling. My “dark days” of illness in college were a trauma for me. I pushed much of it away. I spent years in therapy working through PTSD from everything that happened during that time, much of which I have never shared with anyone besides my therapist. And what started happening recently with my health started triggering old memories and bringing up old emotions. The frustration of being dismissed. The fear of thinking you’ll always be ill. Feeling like you have no control over your body and it’s completely unsafe. The confusion of what to do next. The hopelessness. The helplessness. And some of the physical pain.
As those emotions came up, I had to sit with them and work through them, more deeply than I ever had before. As an energy healer, I’ve learned a lot of tools to work through things on a subconscious level and to face the emotions I had buried inside for so long – things that talk therapy were never going to bring up or truly release. So that’s what I had to do, and I had to do it alone. This was the main purpose of my week-long technology detox I did back in April. I sat in the room at my Airbnb and I dug fucking deep into my soul, and I came out feeling like I had made more breakthroughs in 5 days than most people do in a lifetime. And it opened things up even more for me as an intuitive, which added another layer to all of the input floating around in my head.
When you have invisible illness, everything looks okay on the outside, but you might feel like your organs are shutting down silently and you’re crashing and burning inside. Sometimes I have no idea what people are saying to me because even though I’m trying to focus, I’m in too much pain or too exhausted to process the words coming out of their mouth, let alone hold myself together. I try to pretend I’m not spacing out.
The confusing thing about having invisible illness is that you feel like you don’t have permission to slow down. People treat you the same, and you look fine, and you don’t have a clear diagnosis, so are you really sick? When you have good days, are you getting better, or is it a fluke? Are the good days or the bad days the norm? If people treat me like I’m fine, I should act fine, right? Is it selfish to need a break from life right now? If something was really wrong, I’d be in bed feeling like I’m dying, right?
Well, it got to that point.
The Raw Truth About How I’ve Felt the Last 6 Months
I have felt like a foreigner in my own body for quite some time now, but things really reached their pinnacle a few months ago. I kept asking that question, How did I get here?
I wake up, I put on makeup to make myself feel at least somewhat put together, I walk to the store, I answer my emails and calls, I write my posts, I record my podcasts, I see my clients, I focus on how I can help others, I’m social when I can be, I smile and laugh and live life.
But that’s only part of the picture. The rest of the picture is that it takes me about four hours to feel like I’m actually awake, on a good day. When I wake up, I give myself a 10-minute pep talk to get out of bed, but sometimes I literally cannot get out of bed because my legs feel like lead. Sometimes I wake up and just fall back asleep without realizing it. I’ll set 10 alarms and sleep through them all. I have no control over how much sleep my body needs. I cannot get up without at least 8 hours, but there are days that my body literally needs 14. Fighting it doesn’t work, and trust me – I fight. Long gone are the college days when I could survive on 3 hours of sleep!
There are some days I quite literally cannot get out of bed because of the fatigue, but also because of the physical pain. For awhile I felt like my stomach was rupturing and was going to burst out of my skin, if that’s even possible. Then it turned into deep, sharp pains that came every 30 minutes or so, and it felt like someone was cutting my intestines with a knife. I’ll hunch over to try to reduce the pain in the moment, and I often physically moan, swear very loudly, or start crying. As someone with a very high pain tolerance, the fact that these stomach pains make me actually cry has been very concerning. It also makes me not want to go out very often, because I never know when I’m going to have to double over and lay on the ground. Not ideal if you’re walking down the street.
And then there are the joint pains and full body aches. I feel like my whole body is throbbing and aching. I hate bending in any direction because it hurts. And sometimes I feel like I would feel better if someone put me on one of those machines that they used to use to torture people by stretching their bodies, just so I could “loosen up” a bit.
So if / when I do get out of bed, it’s a very slow start. Every day is different, though. Some days I feel completely normal, which confuses me. There are some days my vision is just so blurry and my brain is so foggy that I’m useless. It’s really hard for me to look at my phone because the small screen gives me a horrible headache. I don’t like texting people because I have to look at the screen, and typing on it makes me feel sick. My computer is easier for me so I stick to that as much as possible, but some days if I look at any screen I will get a massive headache and / or feel like I’m going to throw up. If I don’t wear blue blockers, I’m hopeless. Voxer has been saving me.
Back to the nausea – this has been one of the most frustrating symptoms for me. It comes and goes, but I have to be very delicate with everything I’m doing, because it creeps up on me. Sometimes it’s when I’m out walking, other times it’s when I’m trying to eat, and sometimes it’s in the middle of the night. Some nights are very difficult – especially when my stomach pains are bad. There have been nights when I’m just laying in bed crying from the pain, but also stressed AF about how I’m going to make it to the bathroom in case I have to throw up because I’m so nauseous. What a life!
And then the recent fever / chills. It’s been coming almost every weekend… and it feels like the flu but I know it’s not. I’m radiating heat about two feet around me, and then I feel like an iceberg ten minutes later.
I’m extremely sensitive to lights and sounds. I am very irritable because of this. A few weeks ago I accidentally ripped out a clump of hair because I was trapped in an area with a drill nearby and the noise made me want to rip my brain out of my skull. I am aware of how dramatic it seems, and that only makes me more frustrated, because I know it’s not who I am. My damn adrenals make me so testy.
In the last few weeks, my brain has felt like it’s turning back on, but before that there were days I literally could not see or think straight.
When I made the decision that things were very wrong and I had to make this my #1 priority, I shifted gears. I put myself on a protocol that actually started helping – it was the first time in years my body was responding to something. It was a protocol that would cover hydrogen sulfide SIBO and had some Lyme-specific herbs. I found a few amazing doctors who specialize in mold illness and Lyme disease. I knew that mold was probably a piece of the puzzle, but I also know with every fiber of my being that mold toxicity was not the whole story. I have been very convinced that I have Lyme, as have the practitioners I’ve worked with. I have had multiple tick bites with the bulls-eye rash and fever / illness from the bites, and my history / symptoms line up. My doctors agreed that we would test for Lyme, but start treatment anyways since the test results can take awhile to come back. The doctors didn’t have any additions to the main protocol I had put myself on already except adding in Ozone therapy, extra detox, some adrenal support, and extra histamine support.
I readjusted my life. I had to change my schedule to fit in all of my daily detox “things” – treating mold / Lyme is like a full-time job with all of the supps, ozone, sauna, enemas, castor oil packs, sleep, appointments, etc. I started tuning in and really cutting down on people I communicated with and spent time with. My body was exhausted, and so was my mind. I needed gentle, calm energy, and lots of nights in. My tolerance level for any bullshit or anything that felt like a waste of time dropped from an already low to an even lower level. I felt like my time every day was already so limited because of the treatment, and I had to be really strategic about my work schedule.
I say no to more things than I used to. I leave early from literally everything I go to. I don’t have time for anyone who doesn’t get it, or who tries to rag on me for sleeping a lot or being tired. I retreated while I tried to figure things out for myself. There are many friends I wanted to explain things to, but I couldn’t. I couldn’t look at a screen or stand up without feeling like I was going to vomit – I had no interest in getting into the explanation…which I didn’t completely understand myself. I mean, I started treatment but didn’t technically have a diagnosis yet. A diagnosis is something I don’t personally care about, but it’s harder to explain to other people. I took things one day at a time and only focused on myself.
Do I Know What’s Wrong?
My hopes were up because of my new doctors, but then things felt like they crashed down around me. I was planning on waiting for my official Lyme diagnosis to explain what was going on, but that didn’t come. I’m still in the in-between. My Lyme test came back negative, and that means nothing to me. In fact, I was expecting it, because this is quite literally the story of my life. It only took 15 stool tests to find the 3 parasites hiding around for 5 years! And 3 SIBO tests to catch my SIBO!
I know so many people with Lyme who got negative test after negative test the first few years until they eventually got a positive. There is so much to say about Lyme testing that I don’t want to get into here, but the “no” didn’t phase me, because I fully expected my Lyme literate doctor to continue to move forward. Lyme-literate doctors understand how faulty testing is. Any practitioner understands this about testing in general, and that is why there is always a balance between testing and looking at symptoms. This goes with many infections and illnesses – sometimes the tests don’t pick things up, but the person gets better from treatment. That’s why it’s so important to focus on the person’s symptoms and history instead of becoming obsessed with testing. Anyways, I digress.
I was herxing from my Lyme treatment, which meant bacteria was dying off. I have the symptoms, and the history of the tick bites. So I was very disappointed when my doctor told me there was nothing more to do than to continue with mold treatment. At that point, I had been working on mold for over a year and a half, so obviously it’s not the only thing going on. My heart sank. Here was another doctor, giving up on me.
So the last few weeks I have been emotionally struggling with what to do. My thoughts are complicated by the fact that I get so many intuitive messages. If you don’t believe in messages, I won’t try to convince you, but this is part of my life. They’ve been right too many times for me not to believe. My guides have been telling me for quite some time that I do have Lyme, but they’re also telling me to hold off on seeing another practitioner. They keep telling me to wait. They tell me that once again, I might have to do this myself, which is something I fight with logically. They also tell me I am not going to heal in the “normal way.” Like one day I’ll just wake up and I’ll feel better from one thing I figure out, because my body does not work like most people’s. And that’s why certain healing modalities have only taken me so far – there was a greater lesson to learn. They say to focus on trust and intuition rather than logic. All of this has been echoed by at least four other mediums (I always like to check to make sure I’m not being biased – I don’t recommend reading for yourself for this purpose), all saying the same thing, unprompted by me. I’m keeping an eye on it. (This paragraph is something I never thought I would get into publicly, but there I go! If you want to really understand my full thought process, this is the other part of the picture…)
I have always been someone who likes someone else to be my practitioner for anything I’m struggling with. I could do it for myself, but I want the accountability, and I don’t want the stress. I want to follow someone else’s directions so I don’t have to think about it. I can do it for my clients, but when it comes to doing it for myself – I would rather delegate. Otherwise I overthink all of my decisions. Especially when I get into something like potentially dealing with Lyme disease – I am not a Lyme doctor. I am not trained in Lyme disease. I don’t have the years of experience with Lyme and thousands of previous Lyme clients that Lyme experts have. But again, I feel like I’m back to where I was when I was 20 – do I really need to dig myself out of this hole again? Why is it that I keep ending up there? Do I just wait for a bit and see what happens? Again, it scares me because I am very well-connected, knowledgeable, and an unashamed advocate for myself. I will quite literally do anything or pay anything at this point to feel better – yet I still feel trapped. How the hell are other people supposed to get better who are in similar situations?!
Anyways, I’ve isolated myself a lot because I have felt like not many people understand, and it’s exhausting for me to explain. I wanted to just have a clear diagnosis to update you, but I don’t. I am in that in-between, the in-between I never wanted to be in again. I’ve been very overwhelmed emotionally. I have full confidence I will get better, but living in the in-between for so long is frustrating and exhausting. I want to feel like myself again, so I can do all the things I want to do and be there for all the people I want to be there for.
Why I’m Explaining This Now
I realized that I needed to stop waiting around for a clear answer before explaining to you what’s going on. Fuck it. There are too many other people who are also in this boat, and those people need to understand they are not alone. If you are in this place, I see you, I feel you, I hear you. I know that it feels like it won’t end, but it will. I know it can be frustrating if you feel like no practitioner has your back – but do not give up on yourself. The best thing we can do is feel these emotions to eventually release them. Feel to heal.
I also feel like I’m dangerously close to having some kind of breakthrough (maybe typing it will manifest it!), so I want to get this out and post it so I can look back and remember where I came from.
I am grateful for my life. And I am actually very grateful for my situation, because I believe this was given to me for purposes I don’t have room to discuss here. My situation could also be far worse. But there is also a point when never honoring your struggle is doing more harm than good. Everyone’s struggle looks different, and there is no use in comparing what two different people are going through.
Not every day is symptomatic for me. I never know how I will feel, which is why I don’t like planning much ahead. I go day by day. Some days I can totally function all day. Some days I can function the first half but then I’m wiped for the second half, and others vice versa. Some days, things are just not going my way. I have to honor my body.
I do feel like in the last week, I have made progress. I haven’t had a fever flare in a week, which is the longest I’ve gone in awhile. I haven’t had any stomach pains in 3 days. The energy work I did in the last week has been the strongest I’ve done so far. I hope things continue in this direction.
What’s Happening Now?
As of right now, I have decided who I will see next if I decide to see one more practitioner, but I am going to wait a couple weeks just to see what happens with my body now that I’ve officially finished (as of today) this herbal protocol. Sometimes results show up in the weeks after a protocol is done. I’m also debating just doing things myself for awhile, but I am still undecided. I’m keeping up with all my detox things, including Ozone therapy, which I think has been very beneficial for me. I am focusing on energy healing sessions and brain retraining because those make the most noticeable difference for me. I have honestly gotten more guidance from my spirit guides and from psychics than I have from most traditional health professionals overall. I also have changed my diet, which I think is helping a lot with the healing process. More than most other things. I was 100% carnivore for 30 days and have been about 95% carnivore since then. The dietary change definitely helped kill off bacteria. Maybe my diet will change tomorrow…who knows! I’m just rolling with the punches. Diving back into carnivore has also pushed me into some fascinating research, though.
Above all, though, this time has made me realize how blessed I am to have such amazing friends and an incredibly supportive family. There are many times I feel very much alone, because I live alone and spend a lot of time alone, and also because I know no one else is physically in my body, feeling what I’m feeling. I have always been very independent and try to do everything myself, but this has forced me to break down my walls and reach out to people when I need it. I’m so grateful to my friends who will come sit on my couch with me and watch a movie, cook me dinner when I can’t get up, give me a self-care day after I’ve been crying all night, listen to me grapple through all of this confusion, and put up with listening to my crazy theories. I’m so grateful that my family has my back and is supporting all of my decisions, and that they’re trying to understand and research all of this even though these health issues aren’t part of their “world.” This time feels kind of like it did when I was 19 and in the in-between, but also much different. This time I am sure I am getting out of it…I’m just not sure how it will play out yet. This time I’m not second guessing myself, I think everyone knows I’m not crazy, and I have a village to lift me up when I need it. In a strange way, I think that is part of why this is happening for me.
It’s tricky when you want to share your struggles, but you don’t want to be treated differently, but you also realize you might need some slack sometimes. So many buts. It’s a jumble of confusion. If you’re in a similar place, be gentle on yourself. If I have learned anything, it’s that these experiences have given me an unparalleled amount of personal growth, and an ability to reparent and work through shadow. I have a deeper level of compassion and empathy for others and myself than I ever would have. I understand more than ever what I want past this, what I’m appreciative for, and that there are so many avenues to healing. I am a better practitioner, a better friend, and a better human. I will continue to be.
If you made it through all of this, thank you for reading. Thank you for allowing me to release all of this into this post – I genuinely feel so much better after writing this all out. I appreciate you. I share this with you because vulnerability opens the door to vulnerability, deeper conversations, and deeper growth. We are all on our own journeys. Remember that you’re never alone.
*Let the record state that I’m publishing this on October 23, 2019. If you are reading this further than a week after that date, I can guarantee you I am at a different point in my journey, so please keep that in mind.*
