The Introduction Series: Hello

Hello!

That's me!

When starting a new project, introductions can be helpful. Now is as good a time as any to introduce myself. My name is Mariah, though I go by the pseudonym Madame McWeed. I was born in Maine and grew up on the coast there until my early twenties when I moved with my husband (who was my fiancé at the time) to Alabama for five years for him to go to graduate school. After that, we moved to California, where we have been for three years now. I never thought I would leave New England and now I have lived on all three US coasts. Talk about a charmed life. Living in three such disparate places has shown me so much about life. Moving to California also significantly increased my ability to access good quality healthcare and doctors. No one should have to move clear across the continent just to get taken seriously and get adequate treatment and care.

I was born with a connective tissue defect, though I was not diagnosed until I was 29. Growing up undiagnosed was hard. I had a lot of comorbidities, even as a child, that were passed off as attention seeking behavior. I was diagnosed with irritable bowl syndrome (IBS) as a teenager, but the recommended diet, including increased fiber, made everything worse and doctors were not willing or able to engage further. My current doctors and I now suspect that I had gastroparesis and endometriosis as a teenager, with the gastroparesis presenting with very regular vomiting around age 9. Odds are that the endometriosis was a major contributing factor in the IBS and the lack of diagnosis and understanding led to an additional decade plus of suffering. I was officially diagnosed with gastroparesis by a very kind and compassionate older doctor on April 15th, 2016. He sent me to a motility specialist, who eventually started to wonder if I had some sort of connective tissue problem. I was finally diagnosed with a connective tissue defect by a geneticist on August 21, 2017, with a working diagnosis of hypermobility spectrum disorder (HSD). A few months later, my PCP ordered a special MRI (MRI-Enterography) and my new GI doctor actually diagnosed with me endometriosis and referred me to gynecology on November 8th, 2017. Although endometriosis generally does NOT show up on imaging, endometriomas can and I have one on my left ovary that was rather clear. I also have dysautonomia, constipation, gastrointestinal dysmotility, Postural Orthostatic Tachycardia syndrome (POTS), cardiac arrhythmias, including premature ventricular contractions (PVCs), severe insomnia, and sundry other diagnoses. If you want more information on these illnesses and syndromes, please check out the rest of "The Introduction Series". I will be adding information on those illnesses mentioned as quickly as I can.

There are so many things to remember every day with these illnesses. It's a lot to handle on a daily basis, but it started when I was young and grew with me, so I have slowly adapted to it over the years as it all has changed and progressed. I am not writing this so you will feel bad for me. I want to raise awareness and understanding of these illnesses. Many people know someone with a chronic illness. Although our symptoms are often not the same, we often face many similar issues and obstacles. By illuminating them here, I am hoping to help foster understanding and compassion. People are often facing battles we know nothing about. I am also writing this to reach out to my fellow zebras who may feel isolated and alone facing one or more of these conditions. One of these conditions is overwhelming and often disabling, together they seem like a Sisyphean obstacle. They certainly feel it some days, so heavy and huge that the thought of opening my eyes in the morning is so disheartening and defeating that getting out of bed won't happen. Not all days are like that. Not all days have to be like that, either. Just because I have these illnesses doesn't mean they have me. I do not get to control what happens to me in life, all I get to control is how I react to it. All of my days have symptoms, but that doesn't make them bad days. Life is what we make of it.

Alice on her hut

As I said, I am not my illnesses and I am so much more than just a complicated patient. I have an amazing, supportive husband and two feline fur balls named Alice and Bandit. Since trauma has a lasting impact on all beings, both of my cats have special medical needs. Taking care of non-verbal beings with medical issues is quite a challenge. I tip my hat to those who care for animals and pediatric and otherwise non-verbal humans. I can talk about my kitties more in the future, especially if anyone wants to see a cat use an inhaler. Hit me up here or on Instagram via @MadameMcWeed or @McWeedIndustries and let me know what you want to see more of here. I like cooking (how sardonic), space, science fiction and fantasy, reading, Minecraft, cannabis, farming, social justice, and learning. I am always down to learn something new. Cannabis has been my lifeline through this, and the medical potential of the terpenes and cannabinoids found therein make me hopeful for the future. I also have a bachelor's degree in psychology, a ridiculous affinity for English teachers, and a brain built for numbers and equations. My skill lies in technical documents, so forgive me when I fall into that. When I get overwhelmed, I tend to focus on the technicalities to push through until I can process the emotional impact. You'll definitely see that my surgery approaches in August.

Bandit on our bed

Some of this blog will be really technical. I am hoping to provide concrete options that have worked for me to other people with similar illnesses or symptoms and/or medical professionals treating patients like me. Feel free to gloss over it if it's boring or doesn't apply to you. I am hoping I can help people navigate these complexities a little more easily and hopefully help reduce the suffering in this world. I went nearly three decades before being diagnosed. No one should have to suffer for that long. I also want to show you what it is really like trying to navigate a world made only for able bodies. I don't want you to feel bad for me; I want you to see and understand. We are often hidden, discarded, and/or ignored, so this is one way for me to work to reclaim the power I let these illnesses take from me. I am hoping that maybe I can help others be more easily or more thoroughly included. Isolation is a huge problem with chronic illnesses and that can further decrease a person's quality of life. We're sick, not maniacal werewolves bent on infecting others. My end goal is to change the world, but I am happy if I make any positive difference in someone's life. Maybe you can help me do just that.

Be the change you wish to see in the world.
Be the person you needed as a child.
Build a longer table.

Until next time,
All my love,
Madame McWeed