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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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Toot Your Horn Tuesday Blog Share

TYHTDec18Toot Your Horn Tuesday is a place where any blogger who either has a disability or writes on topics of health and wellness for people with chronic conditions can come and share their best article each month with the Zebra Pit Community. Ideally it would be something that might interest and enrich our readers; Have a tutorial on meditation? Did you demo a product on pain relief? Wrote an article on 12 ways to achieve better sleep? Shared your story about getting a diagnosis? Created some tips on how to deal with difficult doctors? Waxed poetic over the joys of adult coloring as a way to de-stress? Share it here!

Here are the rules:

  1. The post you share doesn’t have to be on a disability health or wellness topic. If it isn’t, you must be the caregiver for, or a person affected by disability and you must occasionally use your blog to promote visibility and acceptance of disabilities (and yes, I will be checking).

For our purposes, I will be using the Merriam-Webster definition of disability: a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.

  1. Only one post share per blog/blogger per month is allowed.
  2. You must like and follow the zebrapit.com blog to participate (liking us on social media is great, but you must follow the actual page). If you aren’t a follower, your comment will not be approved.
  3. Be respectful of the Zebra Pit brand and the community. Rudeness, ableism, sexism, racism or any other intolerant behavior or promoted posts containing these elements will be removed. I expect the same from anyone who participates here.
  4. Blog links should be shared to Toot Your Horn Tuesday specified pages ONLY and must match the month of publication, but you can post on any day or time., NOT just Tuesday! For example: All August 2018 TYHT posts shared here should have been posted on your blog or website between 8/1/18-8/31/18. If you post it in the comments on this page on 9/15/18 or even 11/13/18, that’s fine. People come back and read old posts all the time, so it’s still worth it.
  5. Commenting will be shut down on each post after two months.
  6. These rules are subject to change at the discretion of the editors for the duration of the program.

Participation

To participate, provide a description of your blog post along with a link in the comments section of this post, which will remain open for two months. To find the comments section, scroll all the way to the bottom past the Related Posts section. Once it is reviewed for suitability, it will be posted. I will post a new Big Blog Party post on the LAST TUESDAY of each month so be sure to set your calendars to return next month and share this post to spread the word with your community and blogger friends so they can participate, too! I look forward to getting to know you and  your work better!

Readers

Please keep the conversation going! Take the time to like and comment on the blogs you enjoyed reading so our guest bloggers know you appreciate their work and will keep coming back to contribute to our knowledge base! I may use your reactions to choose certain articles to reblog periodically and build more on the types of  topics covered at the Zebra Pit as well.

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The Importance of Good Posture for Zebras

Posture doesn’t get its due when talking about health and wellness in the Ehlers-Danlos community. Yet poor posture can be a major contributing factor to the misalignment of our joints, causing us endless aches and pains that can turn into long term problems, from our necks and spines, to our shoulders and feet. Posture isn’t something you should just be paying attention to when standing, either. It’s something we need to be conscious of when walking, sitting, lifting, moving and even laying down or relaxing in front of the television at night.

What is Good Posture?

According to the Cleveland Clinic, posture is the position in which you hold your body upright against gravity while standing, sitting or lying down. Good posture involves training your body to stand, walk, sit and lie in positions where the least strain is placed on supporting muscles and ligaments during movement or weight-bearing activities. Proper posture:

  • Keeps bones and joints in the correct alignment so that muscles are being used properly.
  • Helps decrease the abnormal wearing of joint surfaces that could result in arthritis.
  • Decreases the stress on the ligaments holding the joints of the spine together.
  • Prevents the spine from becoming fixed in abnormal positions.
  • Prevents fatigue because muscles are being used more efficiently, allowing the body to use less energy.
  • Prevents strain or overuse problems.
  • Prevents backache and muscular pain (R).

Standing Posture

Developing good standing posture can take work if you’ve developed some bad habits or are in some pain. Take a look at the slides below for some tips on how to correct posture and check your posture using a wall. When first starting out, it’s a good idea to check your posture several times a day to ensure you are engaging in proper posture practices, keeping these tips in mind and utilizing the wall test.

Source: Mayo Clinic

Source: Mayo Clinic

Sitting Posture

Maintaining good sitting posture can be even more challenging with the variety of seating one can face in any given situation. The most important thing is to maintain proper posture when sitting for long periods, especially at work:

20170520_154831
Source: Mayo Clinic

When typing or using your hands, you should be able to do so while maintaining the above stance, with your arms at an approximate 90 degree angle. Computer screens should be positioned directly in front of you so that you don’t have to tilt your head or strain your neck in order to see.

If you find yourself in a seat without a back or sufficient lumbar support, the Cleveland Clinic advises this method of determining acceptable posture:

  • Sit at the end of your chair and slouch completely.
  • Draw yourself up and accentuate the curve of your back as far as possible. Hold for a few seconds.
  • Release the position slightly (about 10 degrees). This is a good sitting posture.

You would then follow all remaining rules from above. They also added these helpful tips:

 

  • When sitting in a chair that rolls and pivots, don’t twist at the waist while sitting. Instead, turn your whole body.
  • When standing up from the sitting position, move to the front of the seat of your chair. Stand up by straightening your legs. Avoid bending forward at your waist. Immediately stretch your back by doing 10 standing backbends.

 

Correct driving position

  • Use a back support (lumbar roll) at the curve of your back. Your knees should be at the same level or higher than your hips.
  • Move the seat close to the steering wheel to support the curve of your back. The seat should be close enough to allow your knees to bend and your feet to reach the pedals.

Correct lifting position

  • If you must lift objects, do not try to lift objects that are awkward or are heavier than 30 pounds (less if you are deconditioned).
  • Before you lift a heavy object, make sure you have firm footing.
  • To pick up an object that is lower than the level of your waist, keep your back straight and bend at your knees and hips. Do not bend forward at the waist with your knees straight.
  • Stand with a wide stance close to the object you are trying to pick up and keep your feet firm on the ground. Tighten your stomach muscles and lift the object using your leg muscles. Straighten your knees in a steady motion. Don’t jerk the object up to your body.
  • Stand completely upright without twisting. Always move your feet forward when lifting an object.
  • If you are lifting an object from a table, slide it to the edge to the table so that you can hold it close to your body. Bend your knees so that you are close to the object. Use your legs to lift the object and come to a standing position.
  • Avoid lifting heavy objects above waist level.
  • Hold packages close to your body with your arms bent. Keep your stomach muscles tight. Take small steps and go slowly.
  • To lower the object, place your feet as you did to lift, tighten stomach muscles and bend your hips and knees.

Maintaining Good Posture While Laying Down

  • In order to maintain proper neck support, your pillow should only support your head, not your head and shoulders.
  • Adjust your head pillow height depending on whether your lying on your back or your side to better support your neck.
  • Try to sleep in a position which helps you maintain the curve in your back
    • On your back, use a pillow under your knees and a lumbar roll under your lower back
    • On your side with your knees slightly bent, try using a thin pillow between your legs and a thick one to hug to your chest to support your shoulders
  • You may want to avoid sleeping on your stomach, especially on a saggy mattress, since this can cause back strain and can be uncomfortable for your neck.
  • Select a firm mattress and box spring set that does not sag. If necessary, place a board under your mattress. You can also place the mattress on the floor temporarily if necessary. If you’ve always slept on a soft surface, it may be more painful to change to a hard surface. Try to do what’s most comfortable for you.
  • Try using a back support (lumbar support) at night to make you more comfortable. A rolled sheet or towel tied around your waist may be helpful.
  •  To protect your back when standing up from the lying position, turn on your side, draw up both knees and swing your legs on the side of the bed. Sit up by pushing yourself up with your hands. Avoid bending forward at your waist.

If you find you’re having difficulty following some or all of these rules due to existing conditions, it’s probably a good idea to see your practitioner and/or get started on a new wellness regimen. For ideas on how to get your connective tissue into healthier shape, take a look at the Zebra Pit’s Protocol List and Health and Wellness sections for some helpful tips.

 

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Choosing Your Own Supplements

A Guide to Better Health

Interested in taking some of those oddly named supplements you keep hearing about in support groups and chat rooms, but not sure where to get started? Wanting to do something to get more energy, but worried that it might be damaging to your health? Over the counter medications and supplements can be scary, especially when you don’t know exactly what a substance does or how it might react to the medications you have to take or what side effects it might cause. As someone who’s been developing her own protocol to maximize her health for a few years now, I understand your reservations. It’s only common sense to be wary and want to protect our precious health. But it is possible to make big impacts on your health and wellness using natural medications that are often as easy as taking a pill and usually free of the ill side effects so popular to prescription medications. This article aims to show you how to safely choose the right supplements for you, how to research them for the information you need, what questions you should be answering for yourself about their safety and how to test them to ensure their effectiveness once you’ve decided to give them a try.

Selecting the Right Supplements

The first place to begin is to find recommended supplements for the condition you need help with. If you suffer from Ehlers-Danlos Syndrome, you might try googling the terms “Ehlers-Danlos Syndrome”, “connective tissue”, or whatever illness you have and “Supplements” or “nutrition” or “protocol” and will probably find quite a number of blog posts that suggest a variety of supplements. You can also ask around in support groups, or use EDS related hashtags on twitter to ask. Most of us who use supplements are happy to offer suggestions. I keep my own list of supplements and remedies. Here are a few other sites to get you started:

Researching Supplements

Once you’ve come up with a few suggestions, you can begin your research. I like to consult at least 2-3 articles to ensure I’m getting accurate information, and at least one of them needs to come from a reliable medical source, such as a university medical center, the Mayo Clinic or an accredited association of some kind. The information you want to gather and verify should include the following:

  • What the substance does and any testing its undergone. Sometimes anecdotal evidence is all you can find. It’s up to you to judge how reliable the source is and whether or not you feel it’s worth it to spend the time and money testing it out.
  • Proper dosage and how to take it
  • Any contraindications of use (reasons why you shouldn’t take it)
  • Possible side effects
  • Possible drug interactions with your current medications
  • Does it need to be taken with other substances to be fully utilized by the body? For example, we need Vitamin D to properly absorb calcium.

If you feel unsure of anything or don’t feel comfortable making the final determination about whether or not a supplement is right for you, take the information to your doctor and let her/him help you decide. Unfortunately, most are not well versed on holistic medicine, but usually if you provide them with enough information, they can offer an opinion.

Once you’ve determined that the substance is safe to take and you feel confident that it will do what you want it to, you want to balance cost with benefit. For those of us on disability, sometimes holistic medications which must be paid for out of pocket can be a real hardship. I always shop around. For better or worse, usually Amazon wins. As a general rule, supplements that are in powder form are more affordable than capsules, so I usually opt for a high quality powder over a capsule. Usually, I shoot for a quality brand without the luxury pricing. Some things are even herbs and dried herbs are almost always quite affordable and when made into teas last quite a while. Try to avoid the more common drugstore brands. They tend to be full of fillers that aren’t very healthy and tend to be less effective. Proper supplementation amounts are very important and could be the difference between being homebound and having the freedom to work. Be sure to read labels and reviews carefully to ensure you’re getting a quality product free of any allergens and tested for quality.

Testing Your Supplements for Safety and Efficacy

When beginning with supplements, it may be tempting to start off with several. DO NOT! It is paramount to your health and safety that you begin no more than one at a time and test it for no less than 2-4 weeks before adding a new one. This way, if you have an allergic reaction or unsavory side effect, you know the cause. You will also be able to gauge whether or not it’s having the intended effect. This is testing phase one.

Be sure to take the recommended dose. If it is recommended to start out on a small dose and work your way up, do so. If the suggested dose is a range, you can either start out low and slow and later adjust up to see if there are benefits to taking more, or at a higher dose if you’re comfortable with that and adjust down later to see if you still see the same benefits. A good guide for this is whether the kidneys excrete any excess, which you should be able to determine through research on most things today.  Still, you never want to exceed the recommended maximum dosage, as you don’t want your kidneys working overtime.

Some supplements take up to a month to tell a real difference while others show in a matter of days. With antioxidants, the changes are usually apparent within a few days. However, you still want to wait the minimum of two weeks to ensure you don’t develop any side effects. Once you’re clear of the two week mark, you can add another supplement to your protocol without stopping the first. You would treat the second supplement exactly as you did the first.

If you have any signs of allergic reaction, you want to discontinue use immediately and treat your symptoms or seek medical care, if necessary. Contact the seller to see if you qualify for a refund. Despite having mast cell activation disorder, I’ve never had an allergic reaction to any of my supplements, but this may just be dumb luck.

Retesting Phases

Once you’ve been on the supplements for approximately 3 months, it’s a good idea to take a break of 1-3 weeks to see how you feel without it. Why? Because you want to make sure that the initial effects were not a placebo effect and that the substance is doing the valuable work you are paying for. With some substances, you’ll know within a few days. As soon as you feel those old symptoms returning, there’s no need to wait. You can return to using it knowing you are getting your money’s worth and it’s doing everything you thought it was. If after 3-4 weeks you still can’t tell any difference, it’s probably time to look for something else.

It’s a good idea to do a semi-regular retest of some supplements, especially antioxidants, as not all need to be taken forever. They do their job and once they’re finished you don’t need to take them anymore. I have discontinued a number of antioxidants I used to take at the 9, 12, or 18 month marks. I usually  test antioxidants every 6 months. It depends on whether I’ve seen a plateau in my health, I’m looking to discontinue something to make room in my budget for something else, or want to switch to a different antioxidant and find it does enough of the same things that I don’t need both.

Now is the time to implement the knowledge gained here and begin designing your own protocol to help get yourself feeling better and moving more easily through life. It doesn’t take a medical degree or a vast wealth of knowledge to design your own protocol. It just takes a little bit of patience, reading and careful attention to detail.

Looking for a place to get started? Take a look at our list of supplements and remedies for some ideas!

Choosing Your Own Supplements