MCAS Part 2 & Dismissive Doctors
Welcome to part 2! This is about the last 8 months and my struggle with, what ended up being, MCAS related problems. It is also about my struggles with dismissive doctors, advocating for myself, and reminding myself I know when something is wrong with my body even if everyone is telling me I am crazy.
Over the past year? Year and a half? I started gaining weight for no reason. My job had changed, but nothing else had changed, my diet included. I had no idea what was happening, and nothing I was trying stopped my weight from continuing to climb. I started feeling crappy, more so than I had in years, and my mental health was starting to decline. I was waking up most mornings feeling hungover, despite not drinking and getting plenty of sleep, my body was severely fatigued all the time and I just felt weak. It was really hard to do my yoga practice and eventually I stopped altogether because I just didn’t have the strength. I saw several specialists, had so many labs and tests done that I lost count, and nothing came back positive.
I explained over and over again to each new doctor that this change was starting to be a big impact, and I could not think of any lifestyle change that happened. I was worried about what my body was doing and I felt out of control, which if you know, is the hardest thing to grapple with mentally. At one appointment, the doctor basically gave up and told me, in not so many words, that whatever was happening was my own fault and I should just see a nutritionist- I actually walked out of that appointment which I have NEVER done. But I just felt so incredibly disrespected and overlooked. The number of times I was told “everything is fine” was enough to make me scream, and it made me feel like I was back at square one, with all these years of hard work being for nothing.
Fast forward to four months ago and I finally asked my doctor to test my gut because I could not think of anything else to try. When the test came back, everything was surprisingly great except for one thing; my gut inflammation was through the roof. That can only mean one of two things; parasites or food allergies. Well this test looked for parasites and I didn’t have any (thank goodness), and I don’t have any official food allergies so what the heck? Well, it turns out my doctor thought it was MCAS related inflammation taking over. She recommended I start a low histamine diet, and gave me additional medications to try and help. I will write a whole post (or maybe several?) on eating low histamine because it has been a journey, to say the least. For now, I’ll give you more of a broad overview.
Well, it turns out basically every single thing I was doing to try and help the situation involved high histamine foods and was therefore fueling a fire I didn’t know was there. When I went low histamine, which is the hardest elimination I’ve done by far, within a week my energy got better. Within two weeks, my mental health got significantly better. By the end of the first month, my joint swelling was starting to go down and I was finally feeling more like myself. I haven’t weighed myself to see if that has changed because honestly, that’s not what I wanted back. I wanted to feel validated and I wanted to feel like myself again, to be in control of my body. I now wake up feeling good, like I actually got the amount of sleep that I did. My depressive episodes and anxiety are significantly better, and my strength is finally coming back. I’ve been able to do yoga consistently again and it feels WONDERFUL.
This whole journey has taken me to some low places, and really tested my strength in ways I didn’t think I would have to do again. My husband was such a rock, continually telling me it was going to be okay when I didn’t believe it would ever be again. And I also gained a lot of perspective that I had lost a little bit along the way. I forgot what it felt like for doctors to tell you that what your experiencing isn’t real, and I forgot what it felt like to feel crazy for knowing something isn’t right. I know that’s the reality for so many of you, and it’s not something any of us should have to go through, but I want to use this experience to let you all know I am still struggling with my health right alongside you. I have some things figured out (maybe?), but by no means do I know everything, or even close.
We are doing this together. I am sharing my journey, the ups and the downs, so that you know you are not alone. You are not the only one crying in the parking lot of a doctor’s office because you waited months for an appointment only to be told you caused your own problem (even though they can’t tell you how you did that). You aren’t the only one subconsciously thinking about your health every minute of every day, but having to act like everything is fine. We all go through periods where everything is under control, and sometimes we have moments where the rug is pulled out from under us and thrown into another room. But no matter what, if we remember that we know our bodies better than anyone, and that we have to advocate for ourselves when no one else will, we will get to the bottom of it. So here’s to things looking up!