Mental Wallaby, MS Reclamation, Uncategorized

Trying CBD Again 👍

I’ve tried CBD before. Being specific, I’ve tried THC-free CBD isolate and a cheap CBD extract, I think it was with the ACDC strain (historically any chance I had for ACDC I took it, since you know, ACϟDC. Probably not the soundest medical decision.)

Last week after Panic Day 2020, I had scheduled an appointment with my GP. Also spoke with my therapist and shot my neurologist a message. A friend recommended I try Lexapro for the anxiety, which I was on board for, up until my anxiety increased at the thought of taking another SSRI. I had a bad experience with Paxil in my 20s, one I very specifically prefer not to revisit. Looking into antidepressants that are good for MS patients with anxiety, I decided to ask after Effexor, and both my neurologist and therapist were on board. I waited as I wanted the final ruling decision to be my GP.

By Saturday night I had grown increasingly anxious about Effexor, polypharmacy, and everything that goes with that. I don’t think I have a chemical imbalance, I know I have an anxiety disorder, and that I’m trapped in my house without my friends/family to help me remember outside isn’t evil and coming inside to get me. […]

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Mental Wallaby, Recipes

Some Tea

[And Now for Something Completely Different.] Beverage tea, hot, iced, however not… gossip, like actual tea.

I grew up with the cursed yellow teabags. Lipton sun tea, Celestial Seasonings Orange Spice, super mainstream grocery store findings. I thought I hated tea and didn’t really consider it until I was 25 when I decided I would make better choices for my health. Fortunately, at the time I was working at a health food/supplement shop and had access to a broader variety of choices.

Since I’ve come to love and lose a variety of teas, mostly specialty or imported, and my collection is ever-evolving. 52teas ultimately shifted my trajectory and helped me move past some of my preexisting biases, particularly with regards to herbal and oolong teas. Now I hardly ever go for the “flavored” varieties, but it was an important step for me to realize the difference between quality and stuff that’s mass-produced and sitting in a box past the expiration date (as in actually gone bad, not aged).

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MS Reclamation

I Ghosted My Neurologist 💔

I don’t think he was a bad dude. It seemed as if in other circumstances he’d be fun and charismatic. He was engaging and interesting when speaking, self-assured in interactions, super confident. He was funny. He generally reviews very well for specialization in neurology, all signs point to him being a fantastic physician. Overall I really liked him. He just wasn’t for me. Whether it was the MS specifically that he was ill-equipped to handle or what, I couldn’t say.

Avoiding doctors, medical professionals, anything to do with white lab coats has kind of been my forte. When I was diagnosed, “they got me” was my first thought. I’d only ever take medication as needed, following directions to the letter, but I would refuse anything long-term. Medicine scares me. Doctors have been intimidating. It’s not in the phobic sense, just a profound discomfort with the unknown if something weren’t medically necessary.

I knew disease-modifying drugs would be medically necessary. (If you’re new here: “Goals of the MS medicines are a birth control pill against a future event”, credit Dr. Aaron Boster, “Potholes in Brain and Spinal Cord, a literal description about Multiple Sclerosis“.)

Strike 1: “It’s probably not Multiple Sclerosis, since you haven’t had symptoms before.”

During our first appointment, he had my medical history right there in a manila folder. I tried telling him no, I’d been having symptoms by that point for at least six years, my records from my GP years prior said “probable MS”. I needed an MRI, at the time I couldn’t afford one and didn’t have the insurance. I’d had symptoms over the years since, but generally under the same insurance-circumstances, or within a range of severity I could ignore.

It seemed like he didn’t hear me. I accepted this as what probably happened at the time, though since I feel otherwise. More like he’d made decisions on the course of how this would play out and nothing I said mattered.

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MS Reclamation

Some Favorite Resources

I realize for many Facebook and similar social media networks are the most accessible, and given the size of the groups, it’s certainly capable of being a fantastic resource with the amount of data available. As I’ve posted before though, I haven’t found a community I feel comfortable with there, and have found other communities and resources I prefer much more.  Whether it’s a result of better moderation, smaller more intimate communities, or even just sites with well-regarded physicians providing incredibly well-vetted data.

Below is a list of the resources I most often frequent, and give a brief explanation as to why I find it a noteworthy resource.

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MS Reclamation, Research

Mindfulness and Everything (Part 1)

I’m not spiritual, I have no faith I practice. I believe in science, that we’re all made of star-stuff. Big bang, Darwin, etc, save for the whole Atheists/Secular Humanists claiming some intellectual superiority over those that believe differently. The claim that you know there is no God feels contradictory to me. Based on my perception of the aforementioned, Agnostic is a much better fit, in that I would assert there is no possible way of knowing. Evolution is still a theory. Gravity is a theory. I feel that belief is altogether another thing, which doesn’t correlate to knowing or unknowing in the context those without faith understand it.

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MS Reclamation, Research

FDA and Pharmaceutical Reporting Vibes, Resources

I’ve previously posted about what I’ve seen as symptom/side-effect shaming or whatever you would call that, within the MS Facebook community. What I didn’t get into is the absurd amount of data I’ve found, that is generally unknown by both the public and healthcare providers, whether that be through simply being unaware of resources, or deliberately for the sake of not losing sight of more prominent concerns.

A lot of the data I’ve been looking at has been resources for adverse reactions, physician regard for patient concerns, and disclosure practices of pharmaceutical companies. Or rather, a lack of, and the reasons behind this. The research I’ve been going through is more patient-focused, I hope to use it to provide a solution that benefits those that can be helped by it. I don’t want to go into details for this project yet, for several reasons, but I don’t want to sit on the things I’m seeing in case their relevancy isn’t apparent or, people just don’t happen across them.

Following is a small list of medical studies and articles, including brief summaries.

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MS Reclamation

Social Media Medical Gatekeeping Rant

Remember when you first had symptoms of your disease? When you visited three or four, a dozen doctors and specialists, had referrals from referrals, had a gallon worth of blood draws? Maybe your doctor referred you for therapy, prescribed an antidepressant because it was “just anxiety”, or “just depression”?

Recall how dismissive your friends and family could be, perhaps still are. Do you remember that moment when you found the right doctor, that one person who believed you? When you received your diagnosis, and felt validated, or even relieved, that you finally had an answer?

You may understand that your experience is not the only experience of all of those diagnosed with the same disease/disorder you share. Your immune system decided you don’t get to walk this week, but there’s a wonderful woman in your support group who’s blind in one eye and struggling to find the right words, it’s all awful and you can see and understand what’s right there in front of you.

Considering this, why do you feel like the pharmaceutical companies, your doctor, and your personal experiences have given you all of the answers? That you completely comprehend the full extent of this condition and possible side effects to related medications? […]

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MS Reclamation

My Supplements, for MS.

I apologize for any confusing language, wrecked grammar, emoji, or random segues in advance. This is likely incomplete and will be subject to edits later. Any updates or changes to my routine or experience, I’ll attempt to post here. I hope I clean this up later.

I need to take stock of what I’m taking, why, and hopefully cut back on this stupidly pricey adventure. I figured I’d share in case any of the referenced material could help others.

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MS Reclamation

Ocrelizumab and COVID-19

Guidance for PwMS from their neurologists seems to have been “carry on per usual” with COVID guidance, which for a lot of folks seems to mean to do them as they normally would, which I completely understand the want for, but please, stay aware and cautious out there.  I’m seeing so much misinformation about the Anti-CD20 monoclonal antibodies (mAbs). Predominantly: neurologists telling their patients there isn’t cause for exceptional caution with any DMT. With a couple of therapies though, this might not be precisely accurate.

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