 *I'm not a doctor, nutritionist, or any kind of medical professional. None of this is medical advice. "You're so sensitive."If only I had a dollar for every time I've heard that. I've been confused my whole life how other people could:
Everything hurts.And, every year it gets worse. No matter what I try. Nothing helps. In fact, most things seem to make everything worse. And, I've tried A LOT. What the hell is going on? I've been asking myself that question for decades. Yes, decades. I've been sick my whole life.When I was at the doctor the other day she asked when the last time was that I felt healthy. I paused, thinking back, trying to remember a time when I didn't feel like garbage and, I couldn't. My eyes teared up. My childhood was filled with seizures, chronic strep throat, blood sugar crashes, migraines, food sensitivities, fatigue, depression, and so much more. A couple of years ago, I made a spreadsheet with a row for each year of my life and filled it in the best I could with health events. Even during my "healthy" years, I had a lot of health issues. I spent those "healthy" years trying to ignore everything going on with my body because, for my whole life, whenever I mentioned how I was feeling, people acted like I was being dramatic or just being a downer. It made me think everyone was in pain all the time too and I'm just the asshole weak enough to talk about it.They all seemed so tough to me all the time. How they could just push on and drink beer, stay up late, not be so distracted by their bodies that they could pay attention to the world and have conversations with strangers about nothing? And, I just couldn't. I felt so damaged. The phenomena behind it is called Toxic Positivity. And, although I wish it had a different name, it does perfectly describe the gaslighting I experienced over and over by the people around me, including medical professionals. It created a mountain of shame and a constant anxiety about how to continue on living. We live in a society that constantly pushes you to SHARE but, every time I shared how I felt, I was labeled "negative", dismissed, and/or accused of being dramatic/attention seeking. I shut down. It reached a point where I couldn't ignore it anymore.At 29 I was literally knocked off my feet. It was a mellow Sunday morning and I was in my bedroom. I bent over to grab some paint samples out of my purse when the whole world flipped on its side sending me flying head first into my bedroom wall and onto the floor. Now, the world didn't actually move at all but that's what my eyes showed me and what my body felt. I was hit with a severe vertigo episode. I crawled downstairs hoping a roommate was awake to help me but the house was quiet. So I clung to the kitchen table for over an hour until one of my roommates woke up. He rushed me to the med clinic where the staff was stumped as to what happened, gave me an anti nausea shot, told me it was probably a virus, and then sent me home. That was just the first of many painful and terrifying experiences on my deep descent into chronic illness.I had already had decades of gut issues and more but to me, that was just normal. What truly disturbed me were those vertigo episodes that just kept hitting. And, the next doctor I went to just lazily wrote a prescription for Xanax after telling me I needed to "learn to calm down". I died more and more inside with each passing day. The world was constantly moving and I was in hell. At 30, I cried a ton. It was crushing trying to figure out how and when to kill myself because I didn't know how else to end the misery. And no doctor would take me seriously. A third doctor recognized my symptoms, ruled out anything neurological, and got me to the House Ear Clinic in LA. They diagnosed it as Vestibular Hydrops since I didn't have tinnitus, yet. But, following up with my neurologist later that day, he said that Vestibular Hydrops is Meniere's disease. Either way it didn't matter. Tinnitus started a few months later and I began following the Meniere's Diet and actually regained some of my life. I always questioned the diagnosis, I still do to this day. My vertigo attacks start from a ball of heat that comes from my gut/uterus. This heat moves up my body to my head. Try explaining that to doctors 🤣 queue the blank stares and judgement! Anyway, I regained some life, enough to where I could work, drive, and exercise. The fear of another vertigo attack was ALWAYS looming in my mind. But, for the most part, I could function again. I learned that exercise could stave off a vertigo episode so I dove into Krav Maga. I loved martial arts as a kid and teen. So, it felt like home returning to the mat and training to fight again. A couple of years later, a weird episode hit while training. It was a catatonic spell mixed with the heat rush I would feel before a vertigo attack. That doesn't even fully describe it, I have no idea how to really put it into words. It was scary and weird and freaked me out. Then, I started getting brutal cramping in my legs and feet. Next, I couldn't hold my head off the ground during Ju Jitsu. My feet felt heavy like cinder blocks making running impossible. Exhaustion slammed me and no nights sleep could relieve it. Then, BOOM, gained 30lbs in 2 weeks. Hashimoto's had hit. Doctors have never been much help.I'm thankful that neurologist listened to me and got me to the ear clinic but when my thyroid went, he dismissed it. In fact, as I was telling him I felt like hell and couldn't stay awake through an entire day, he dismissed my sky-high TPO number and told me everything looked fine. And, that he wanted to take me on a trip to Italy "as friends". I had to find a new doctor. There was no way I was going back to a MD (or a man, he wasn't the first to be inappropriate), so I found a NMD. She looked at my labs for a split second before pointing to my TPO number and saying "You have Hashimoto's". The only reason my TPO was even checked was because I insisted on it. My acupuncturist always had a book on her coffee table that I would flip through while waiting on my appointment. It reminded me of my mom so I would read it and send her photos of the pages I thought she might find interesting. In this book, the author mentioned having your TPO checked when checking your thyroid labs. So, I did. The book was "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal" By Datis Kharrazian a.k.a Dr. K. It often seems like unless you have strep throat or a broken bone, MDs can't help. Or, don't care to even try anything beyond simple bloodwork. Once that comes back as "normal" their job is done and you're out money and time but still not any better. I often feel worse after leaving a doctor's office. Many are arrogant, rude, and dismissive. Just because they don't know and don't try, doesn't mean the patient is crazy. It's an insanely fucked up system. What other profession can you not do your job and still get paid? All I can think of are politicians. I realized early on I'd have to figure this out on my own.And that felt devastating. I could barely think, was working full time, had severe chronic fatigue, and now I had to try to figure the most complex system I know of, the human body. Where to even start? I'm a designer, not a doctor. So, I hit up that ole google search bar and spent the next decade of my life, all of my 30s reading article after article, study after study, book after book, watched video after video, course after course, and tried diet after diet. I probably could buy a house with the amount of money I sank into supplements that made me feel like shit or did nothing and healing modalities that either didn't help or just hurt me more. And, at the end of it, I was more sick than when I started. Good times! When Hashimoto's came, my MCS worsened and then Fibromyalgia hit, along with crippling migraines, and other mysterious health scares, leaving me seeing doctor after doctor.It's been a downward spiral. Each new lead on healing gave me hope for a better future but left me worse off than before. Or, worked at first and then stopped working for no obvious reason. It has felt like I've hit wall after wall after wall. It's crushing. You'd think after all of that I would stop searching.That's probably what a sane person would do but I have this grit inside of me that doesn't want to accept that this is how I'm going to feel my whole life. So, in my insanity, I went down another google-search rabbit hole and, finally, stumbled upon MCAS. I actually didn't think I had it at first. "These people are really sick." I thought to myself while being diagnosed with 3 diseases and only being able to eat 2 foods. Even though I've seriously thought about killing myself many times just to end my suffering, I love how I can still think that I'm not doing that bad. I watched videos of a girl that basically has to cocoon inside her bedroom all day otherwise she ends up in the ER. That isn't me. I only end up in the ER occasionally. When I dug into MCAS a bit more, I realized I have ALOT of the symptoms. The list below is from Dr. Tania Dempsey's website and I'll put in bold which symptoms I experience regularly.
That's a whole lot of symptoms.And, that list isn't complete. I'll list some more below in a bit. But first, after I read through some of Dr. Dempsey's site, I realized that there was a very real possibility that I had MCAS. And, just by reading a small bit about it, I knew how incredibly complicated it can be to treat. So, I checked into Dr. Dempsey's pricing and soon realized that getting an appointment at her practice was not only a 2-year wait on her waitlist but, $2,000 for the first appointment alone. Then, I would need a ton of labs, not covered in that $2k. And, after all the labs, another $2,000 appointment. And, that would be just to get started. I know there are other doctors out there but I also knew that even if they charged less, I would still need a ton of labs and that cost alone is not something I could swing. I felt the stabbing pain of defeat, had a small pity party for myself, and then decided to eat a low histamine diet and move on with my life. So, that's what I did for the next couple of years.I ate as carefully as I could, rode out all the weird and painful flare ups, landed in the ER a couple of times, and just coasted. I switched over to The Bean Protocol which helped a ton at first but wasn't the sustained change I was hoping for but at least it was something. The beans, carnivore, and meditation (lymbic retraining) are the only things that have moved me in a positive direction at all. When I moved back home to the US and everything really flared up huge, I decided to start digging again for a better way. For something helpful. And, MCAS popped up again and I found myself back on Dr. Dempsey's website. Her colleague, Dr. Afrin wrote a book about MCAS so I decided to buy it and dive in.
Realizing that seeing a specialist was not in the cards for me anytime soon, I went looking for other resources.That's when I found Mast Cell 360. This website is a godsend. It has a ton of free information. I'm so thankful for it. Since MCAS is a disease in which your Mast Cells aren't functioning properly, the Mast Cell 360 site has a questionnaire where you can roughly gauge how haywire your mast cells are. So, I took the Mast Cell 360 Haywire test. You can take it here. I scored a 17. Which lands me in the "Severely Haywire" category.  She recommends her Nervous System Reboot course which is $99. I just don't have the money to spend for that right now. Since the course focuses on calming your nervous system I decided to continue on with my meditation and DNRS practice. Learning about all of this was overwhelming.First, for most of my life, I thought I was just "sensitive" a word I fucking hate. Then, I thought I had a thyroid issue. I just need to "nourish" that thyroid and I'll be a human again. But, here it was looking like a mast cell disease. Being someone who wants to get to the root cause, I had to know what happened to stir up this disease in my body. The root causes of MCAS:From Mastcell360.
After reading the root cause list, I decided to break each section down and note any connections. Food triggers beyond histamine.I have so many. It seems to be an ever-growing list. So this is a strong "YES" for me. It's also the area that has been the most frustrating. I LOVE food and I love to eat but food for the last decade of my life has been a terrifying field of landmines. And, since I "don't look sick", it's been an area where I've received the most judgement and criticism with people dismissing my fear of eating foods that cause me extreme pain and others labeling me orthorexic. I just want to eat food and not be in pain, it's that simple. Infections and toxicity.Yes and yes. From toxic levels of metals in my system to living in areas where I found out the water supply had been contaminated. To the obvious allergic reactions I have to scents, smoke, and chemicals, I absolutely have issues with toxicity. Infections are more stealth. I've had sinus problems since living in a moldy apartment in Santa Barbara, CA. The dutch urine test for mold was negative. But, I just learned from Jess Aldredge that a lot of people test negative until they start taking binders, then their levels go through the roof. Do I have moldy sinuses? Maybe. I have a lot of the symptoms of SIBO. DO I have SIBO? Maybe. Genetic factors.There are a lot of genetic factors linked to MCAS. Histamine and MTHFR being most notable. I have problem SNPs with both. Below are my histamine SNPs and circled in red is my histamine snp that is compromised. And, below that are my compound heterozygous MTHFR mutations. You can identify them in yellow.   I'm planning on doing a deeper dive into MCAS genetics to see what else I have but those two alone create a "YES" for this section.
Nutritional deficiencies.Thanks to a lifetime of an improperly working gut, I struggle to absorb nutrients from my food and end up deficient. So, yes, I have nutritional deficiencies. You can see some of my recent labs below.  Hypoxia (low oxygen).This one is more challenging. The symptoms of Hypoxia are below and my symptoms are again, in bold.
Is this why I get hit with cold chills and my fingernails turn blue?!? Even though I have most of the symptoms, I'm going to give this one a "NO" just because I don't understand hypoxia well and those symptoms could easily be from hormonal issues. Hormone imbalances.
Stress and/or early trauma.Boat loads. I'd go into detail but I don't think it's worth it. But, it is very safe to say that stress and trauma have played a big part in my life. Random thought about it: The other day I read that there's a connection between our gut health and our ability to have a calm nervous system. So, as long as your gut is inflamed, you will also continue to have to work hard to regulate your nervous system. This explain SO MUCH of my life. I would link to where I read that but I can't remember where it was. It just may have been the Mast Cell 360 site. Who's sensitive now?!?The results, 6 out of 7. It looks like I have a whole rich soil from which MCAS could germinate and grow within. I may not be able to afford all the expensive labs so that a doctor can hold a paper in their hand showing in black and white the mast cells present but, I can at least look at this list of metaphorical arrows all pointing in that direction and know there is a high likelihood that MCAS is very much is the case. The journey continues.As you can tell, it can be really hard to get a proper diagnosis. That's why you have to be your own doctor. I may never get diagnosed with MCAS but that will never stop me from pursuing what matters most and that is healing. So, my next steps are to continue to do the things to help calm my system. And, the first step for me is gut repair. You can read more about that in my Bean Protocol Posts.
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Hi, I'm Dana.I love art, design, vintage goods, healthy living, and weirdo fringe stuff.
I design wallpaper and textiles under the name Dolphin & Condor. I have my own line of pillows based on the periodic table called Element Pillows. I have an ugly Christmas sweater shop called My Ugly Sweater. I edit and sell vintage photos under the handle Photo Trade Co. And, so much more! Can you tell I enjoy working? Categories
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