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Chronic Illness Resources

Please note: This post may contain affiliate links. It was also updated and reposted on 10/12/19. Thank you.


I’ve been wanting to do a sort of round up post talking about the various resources available through the Zebra Pit. As you know, I’m always collecting resources for my posts and such and I’ve begun collecting everything so you can access it, too. We’ve also been growing like mad, so I want to make sure that new visitors know where to find everything. This post will let you know all the ways you can do that and just what we offer on each social media platform. It’s also a great opportunity to brag a bit about being named a MUST READ BLOG in 2019 by Morgan, who runs Brains and Bodies Blog!

ZP a Must Read Blog in 2019

I was so honored to  recently have the Zebra Pit named a must read blog for 2019 by Morgan, who also has and writes about Ehlers-Danlos Syndrome. Here’s what she had to say about the Zebra Pit:

Brains and Bodies Blog Review
From “10 Must Read Chronic Illness Blogs in 2019” by Morgan, Brains and Bodies Blog.

Thanks so much, Morgan! I feel truly blessed by being included! The Zebra Pit was named among some of my own favorite blogs, while the list still managed to introduce me to a couple new ones. Be sure to check out her post to see who else she selected and look through her work while you’re there. I think you’ll like what you see: Brains and Bodies – 10 Must Read Chronic Illness Blogs in 2019

On Blog Resources

The Zebra Pit has been putting out blogs for over 4 years and now contains over 300 posts! No, not all of them are eyes-glued-to-the-screen-pulitzer-prize style writing. Some are inconsequential rambling and some are even downright bad. I suffered from much worse cognitive issues when I was first starting out; my writing took a huge hit during that time. It’s part of why I chose to go by a moniker. But those days are long since past and hopefully they’ll stay gone a while.

There’s also a lot of good stuff. Great stuff, in fact, and it’s not always easy for me to admit when I’m proud of something. I reshare and repost the good stuff all around the net so people who have never seen it before get a chance to read it. I believe in what I do here and I hear more and more on social media that my posts are helping people uncover long undiagnosed conditions and ways to treat them. It’s great motivation to keep writing and sharing and updating my work.

But you don’t have to sit idly by and wait for something good to come along on one of my social media streams. I maintain primary or static pages that list my work by category or section and I do my best to keep my pages well organized and up to date. Here’s how to find what you’re looking for:

On a Computer

Links to the page sections are listed in a menu at the top of the page:

Screenshot of the Zebra Pit main menu

On a Tablet or Smart Phone

The Main menu is hidden in a pop-up menu at the top of the page that’s symbolized by a white box with three lines on it:

Where to Find the Zebra Pit's Main Menu
The yellow arrow indicates where you click to access the main menu on mobile devices.

When you tap the box, the menu opens to reveal the categories you can choose from:

Screenshot shows the main menu expanded in a pop-up view on a mobile device in a web browser. It lists the following categories: "About; Recipes; Contact Us; Medications; Health & Wellness.
The Main Menu open on a mobile browser (Mozilla Firefox)

Categories

There have been a lot of changes to the Zebra Pit recently and our categories are no exception:

Our content catalog has grown, so of course our static content pages had to grow with it. Our category pages for now broken out in the following way:

  • Conditions – All our health and wellness content by condition. Looking for the latest news on Ehlers-Danlos Syndrome or MCAS? They each have their own sections, along with all the other conditions we cover.
  • Product Reviews – This section includes all of the health and wellness devices and books we’ve reviewed on the Zebra Pit.
  • Medications – This is really more supplements, vitamins, minerals and OTC’s, but it’s where you’ll find everything we’ve reviewed and discussed in these categories.
  • Diets & Recipes – Whether you’re looking for general nutrition information, instructions for specialized diets or just a great recipe for some gluten free stuffing, you’ll find it here.
  • Movement & Therapies – Fitness information and body work tips for chronic warriors, from pilates to fasciablasting.
  • Spoonie Arts and Culture – Looking for something to read, new ideas to get your creative juices flowing or something to tickle your funny bone? We’ve got it!

Search for Content

Of course if all else fails, you can also do a search by keyword! There are two search boxes for your convenience, located at the top on the right side bar, or in the bottom footer area, where you can also find posts sorted by topic.

Off Blog Resources

I’ve been thinking about the fact that if you don’t follow me anywhere on social media, you probably miss a lot of quality content. In addition to the blog, which I save primarily for my writing and that of the occasional guest blog or reblog that’s strictly on topic for ZP, there are many other ways I put out news, information, other blog articles, general updates about my life and so forth. I do different things on different social media outlets, so I’ll cover each one in some detail. To follow me on any of these social media outlets, simply click the icon to the left of each description or the in text link.

Instagram Logo

If you’re looking for the general life and health updates I used to do on here, I’ve started doing that sort of thing once or twice a week on Instagram, where I also share memes of encouragement, education, awareness and inspiration. It’s not unusual to catch me on there waxing poetic about life, disability, personal growth and mental health. You know, just the light stuff. I didn’t purposely set out to divide things this way, but it works well and saves the blog space for health and wellness topics. I’ll still write personal essays to post here occasionally. They’re just usually longer, more quality stuff than what I usually give IG. You can follow me on IG, here. When it works, my Instagram thread gets delivered to my Facebook page and Twitter feed, though with Twitter it’s not direct (you have to click through to see the image on IG).

Facebook-logo

Facebook is a great place to follow me, because absolutely everything I share, barring my Twitter interaction, gets shared to our Facebook page, with one caveat. I post just about anything that comes across my path of interest; research, articles, videos, blog posts, memes, posts, anything that’s helpful to spoonies. And of course my IG page and all Zebra Pit posts are funneled through this feed as well. Now for the caveat; if you follow me on Facebook, be sure you go into the follower settings and choose *see first. Otherwise, you’ll be lucky if you see any of what I post:

Facebook Follow First

There’s also our adjoining Facebook group, which seems to be growing at a tiny rate despite my terrible penchant to forget it for weeks at a time. I always respond when people post, but I admit, I’m not a very good facilitator. I really could use some volunteers who are about 200% more sociable than I to help me with this sort of thing.

Twitter Logo

I do a lot of the same thing on Twitter, but the content varies a little. I don’t always get everything to Facebook that I post on twitter and vice versa. It seems my attentions often get divided, but I do my best to check in and share the most important things everywhere, every day. Follow me here on Twitter.

Pinterest Logo

My Pinterest page is really quite amazing to me. It’s hard to believe I just began with it last fall and have over 650k monthly viewers and growing. I have nearly 100 boards on a variety of health and wellness subjects for spoonies. I even cover a few things I don’t cover here, but are of growing interest to me, like all natural and organic DIY hair and body products. I believe I’m becoming mildly obsessed (shhhh….just let it happen). And just think, last summer I was certain I could go my whole life without ever knowing what a pin was! I encourage anyone with chronic illlness to follow me, as I share a ton of information about many, many conditions on there.

If you’re a chronic illness blogger, be sure to join my group boards and Tailwind Tribe, if they suit your subject matter:

  1. The Zebra Pit Spoonies Group Board has almost 50 members. Come pin with us! Open to anyone with a chronic conditions of any kind who maintains a website or blog.
  2. My Poetry, Short Stories & Writer’s Group Board is open to any and all bloggers who focus on the topics of creative and freelance writing.
  3. My Tailwind Tribe, Medical Zebras and Spoonies Unite! is only 2 weeks old, but growing fast and has almost 30 members already. Grow with us in this incredibly lucrative way to pin. If you aren’t yet a member, you can save $15 if you choose to buy a plan when clicking the link. I’ll also get $15, which will help me pay for my renewal. Thank you!
YouTube Logo

And of course there’s the Zebra Pit YouTube channel that consists mostly of exercise videos whose very existence make me cringe in horror, but seem to actually get viewed from time to time. I’m working on getting up the courage and energy to do more with it. There’s a reason I write, though. My social and performance anxieties are no small part of why. I’ve had it suggested I should do a podcast, but I just can’t even imagine. I think I’ll save us all the torture and myself the psychiatry bills. I’m best served up in print. Still, if you want to get some pointers on safe exercise, hear me moan about my dysautonomia making it impossible to control my PTSD flares or whatever else I decide to take to the screen to discuss, you can subscribe here along with the 16 other brave souls who have chosen to, lol.

Of course there’s more reason to subscribe than just my videos. I’m saving valuable videos on playlists, too! I haven’t gotten very far in this venture as of yet, but if people show an interest, I’ll reserve more time to do it. I find I really enjoy curating all of these things. Perhaps there’s a bit of librarian in me, after all.

There’s my new blog, which I’ve been remiss in inviting everyone to check out, but it’s probably not going to be everyone’s jam, either. Mostly it’s a place to showcase all of my writing, some of which is actually about things NOT chronic, gasp! A very little sum of late, but that’s okay with me. I like hanging out with you fine folk here at the Pit. If you enjoy poetry, the occasional short story and some other creative work, personal essays, opinion and pop culture criticism pieces, give my other blog a follow. My posts from Mykie Writes It also get pushed to Twitter.

Email Symbol

Finally, we’re still working on getting our newsletter up and running but we’re getting closer. The idea is to offer a weekly or monthly “best of,” along with any special offers I may have from affiliates, things to watch out for and other news from the Zebra Pit. My goal is to have these out no later than January, 2019. Subscribe now and you’ll be all ready to go:

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Diet and Supplementation for Persons w/ EDS

Editor’s Note: This post was last reviewed for accuracy and updated on 4/16/19. Thank you.


Dr. Heidi Collins discusses diet and supplementation in persons with Ehlers-Danlos Syndrome in this presentation from the 2017 Ehlers-Danlos Society Global Learning Conference held this year in Las Vegas.

To see the slides from this presentation, go here.

Diet and Supplementation in EDS Pin1

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New Concepts in Neurological and Immunological Recovery

Please note this post contains affiliate links. If you click on one and purchase something, I may receive a small commission, paid to me by the company selling it. There is no additional expense for you. Most importantly, this doesn’t change the fair and honest opinions provided about any product represented on this site, as we will only ever post those we feel good about recommending. Our readers come first! This post was reviewed for accuracy and updated on 4/21/19. Thank you.


Meet Dr. Kendal Stewart, an ENT who specializes in the treatment of Autism. You may ask yourself why on earth I would share videos about Autism on a blog that specializes in connective tissues diseases, but it’s not nearly as much of a stretch as you might think. This is because Ehlers-Danlos Syndrome (EDS), Myalgic Ecephalomyelitis (ME/CFS), Fibromyalgia Syndrome (FMS), Myasthinia Gravis (MG) and other common “spoonie” syndromes all have autonomic and neurological components that are shared with Autism. As you watch through these videos (and I strongly encourage you to watch all four), you’ll see exactly what I mean. In fact, Dr. Stewart himself states that the methods he discusses in treating the problems he’s talking about addressing, are the same exact problems across all diseases with autonomic and neurological factors and they will work for them all.  That’s why he’s not talking just to Autism patients, but to all those with neurological disorders.

While I’ve been aware that nutrient deficiencies are partly responsible for some of these symptoms, it wasn’t until I watched these videos that I understood that some vitamins and minerals can be methylated. Methylated vitamins are fat soluble and can be absorbed through the skin. In some cases, methylation is the only way we can get them into our diets because of common gastrointestinal problems that make it difficult for us to ingest them. He covers this in much greater detail, but he of course also covers exactly what nutrients we commonly lack along with what symptoms they cause. I’ve included all five videos below for you to watch.

Next I’m going to share some links to a few of the products he discusses. I haven’t tried any of them, but I have tried most of the supplements that are in them, so I can tell you the compounds work. Given the pricetag and the fact that Dr. Stewart’s name is on the line if these supplements don’t work as promised, I would be absolutely shocked if they weren’t the highest quality.

Just one tiny example of how much better something absorbs into the skin, I recently started taking Epsom salt baths for the extra magnesium and it’s no big surprise, my migraines dropped from 5-7 a week to 1-2, despite the fact that I’ve been taking magnesium orally for over a year.

I also take D3 orally, but I have to take 10,000 IU a day just to keep myself in the low normal range. That’s an outrageous amount to have to take orally to get to the low range. These things tell me that I’m probably the perfect candidate for methylated vitamins and minerals and I’m sure many spoonies with IBS, gastroparesis and other common stomach problems probably are too. Of course I could also have the MTHFR mutation, which makes it impossible to convert many unmethylated vitamins and minerals to their usable forms. There’s no way to know for sure until I’m tested and the MTHFR mutation is prevalent both in spoonies and autistic people.

I’m only sharing a few of the products that I feel would be most effective for our populations, but if you poke around a bit, you may find others, too:

  • Neurobiologix Calming Cream– This cream contains a number of calming nutrients perfect for dysautonomia patients, anxiety disorders and insomnia.
  • Neuro-Immune Stabilizer Topical Cream– This cream may be of particular interest to anyone with the MTHFR mutation, as it contains 5-MTHF in methylated form. It would also be great for anyone deficient in D and B vitamins
  • Mitochondrial Restore– Packed with antioxidants and minerals, this pill will bolster the immune system, improve cognitive deficits and energy.

Note that many of the ingredients in these supplments are also listed on my protocol. I know they work because they’re already helping me. Some I take at higher doses, as we’re all individual and need to be supplemented at different levels. One size fits all medicine simply doesn’t work. If the above products work for you without modification, wonderful. If not, you may want to design your own protocol, as I have done and am often revising and improving. Here’s some of what’s on it, now: Medications and Supplements

New Concepts in Neuro Pin1
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