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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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It’s a Zebra Pit Birthday Party!

Strap on a hat…

Grab a balloon…

And settle in for some cake…

It’s Time for a Birthday Party!

On September 30, the Zebra Pit turns 4! I’m so excited to have arrived at another blogversary and that we can tick off one more year of success. And quite the successful year it has been, filled with tremendous growth and a few firsts.

Honoring the Good Ole Days

It hasn’t always been called the Zebra Pit. When I first started, I didn’t even know what a medical zebra was, let alone that I would soon be counted in their numbers with a diagnosis of hypermobile Ehlers-Danlos Syndrome. Once I received that most coveted diagnosis, I knew I had to change it from Disability Depot (a name that was problematic for many reasons) to The Zebra Pit we know and love today.

Once upon a time in a land far far away, we were called…

The discovery of EDS a year before my diagnosis set me on the path toward significant symptom improvement and a life dedicated to achieving my best life possible. The subject matter of the Disability Depot began to morph with me and our mission became about patient education and providing practical solutions to the many symptoms so many chronic conditions have in common. It was in this spirit that I began transitioning from the Disability Depot to the Zebra Pit, officially changing the name in late September of 2017, almost two years after I’d begun.

I didn’t take it seriously starting out, which isn’t surprising given the shape I was in. I had a free account and I lost most of my viewers because I didn’t do it right. I put myself in the position of starting over again. In the long run it turned out to be a good thing, but having no understanding of how to find interested readers would hold me back for a while longer. It’s only been in this past year that I’ve had more energy and fewer cognitive issues, allowing me to do the necessary work to get us to grow.

Grow we have. The Zebra Pit has experienced significant growth and thanks to the contributions of many people who believe strongly in the Zebra Pit’s mission of providing practical solutions to some of our toughest spoonie problems, we finally had the funds to go out and find the people we want to help.

2019 Milestones

I’m thrilled to announce the Zebra Pit has finally earned enough in 2019 to pay for itself and continue with our growth efforts. Every penny earned for the remainder of the year will go toward its growth and covering next year’s fees, ensuring we keep “the lights on” for another year so we can keep serving the community.

The Zebra Pit continues to grow and grow. We may have started small…

but we’re begin to show our might, receiving visitors from 135 countries so far this year. Of course spread doesn’t come close to telling the whole story.

We’ve seen amazing growth, especially in the last few months, more than tripling our visits from 2018. We experienced our first viral post in July, which reached 10,000 views in 4 days. It shattered our fairly steady 5k per month average, seeing over 17,000 visitors in a single month, 10k of which was from a single post! Since then our monthly averages are growing like wildfire!

July Stats
September Stats as of 9/25/19
Anybody understand why the growth only says 380%? It’s actually 481.6%.

With almost 500% growth by the end of the month and having our first 1.3k days almost as a matter of course, it’s not unreasonable to anticipate total year end growth to be 500% or more. Our numbers from last year? A minuscule 13.6k that I was quite proud of at the end of last year is now something we can achieve in 10 days. Right now, I’m feeling kind of silly about that (what can I say? I love to write and didn’t want to spend spoons on strategy), but at least I’m finally getting it figured out and if numbers keep up, we could be seeing another 80-90k this year, based on conservative estimates of 890-1000 views per day. If we manage to pull that off, we’ll see more than 1000% growth in 2019! 🥳 We’re looking forward to making it happen and then shattering those records again next year!

What’s the Big Deal?

These numbers not only mean that we’re finally reaching the right audiences, they also mean more advertising revenue and affiliate opportunities. Getting in a steady stream of revenue means I can evaluate more potentially useful products in our posts, attract more sponsors, affiliates and readers and spend on continuing to grow our knowledge pool and staff.

We’re earning by partnering with affiliates with similar missions who are willing to pay for the valuable service of promoting their products, which is a win-win for us and our readers. My hope is that those gadgets will get better and better. Getting complimentary products to try means I get to do so without breaking the bank while still providing a valuable service to our readers by writing great content, spreading knowledge and awareness alike.

We still have a bit of a ways to go, but with freelance opportunities coming along more and more frequently, I feel a little more confident about both the future of the Zebra Pit and my family!

New Faces at ZP

Pamela Jessen, Contributing Author

It’s not only our readership that’s growing, either. I get inquiries from people interested in working with the Zebra Pit or asking for advice on how to make their passion project more successful. We also get more and more recognition from our fellow chronic illness bloggers, whose support we couldn’t do without.

David Curtis, Editor

We’ve had some great guest posts, like this one from Tracy Hagler and brought on Pamela Jessen as a regular contributing author whose writing and wisdom has added a great deal of value to the Pit. More recently, my husband David has also begun contributing posts regularly, providing a male perspective on living with chronic illness and offering some comic relief with his quirky titles and sometimes tongue-in-cheek writing. While David has contributed for years behind the scenes, I’m thrilled to see him taking a more active, public role. We’re not sure what the future holds for him, though and I may have to do without him if we find a workable solution for him to return to work.

Maintaining Motivation

As a disabled person wearing many hats as the founder and managing editor of ZP, my growing freelance career and the start up of a second blog focused on my literary writing, it’s not always easy to keep all the balls going. My health often interferes with my progress and my confidence in my ability to succeed, just as my work interferes with the needs of my body. Lately, more of my time ends up going to administrative functions than actual writing and that’s sometimes enervating. Big dreams sometimes come with costs we simply can’t account for when embarking on something new, especially with brain fog! Every time I come close to giving up, someone in the community finds a way to reach through the fog and anxiety to gently infuse me with new hope and purpose. I need my readers as much, if not more, than they need me.

As much as I love this website and would give it my last pint of blood to keep it going, I can’t maintain positive mental health if my head is always focused on chronic illness and I let chasing success drive my stress levels up too high. I’m a creative by nature. For that reason, I began working late last year on reviving my creative writing career, which I had no choice but to set aside when my brain fog became too severe to write and edit creative work.

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I returned to two poetry series I’ve been working on for some time (one I have every intention of publishing once it’s complete) and opened a second blog, where I can showcase my creative work, talk about the writing process and blogging techniques. If you want to know how I’m increasing my numbers so fast, I’ll be talking about it there, at Mykie Writes It. I also offer information about my freelancing services, something motivated by a need for funds and desire to enrich my own situation.

While companies I’ve applied to work for continue to turn their nose up at the gaps in my employment and health status, I’m making my own way in this world. It’s one more ball to juggle and it feels pretty surreal to be working on someone else’s deadlines, but it’s been a great boost to my confidence and I’m already looking forward to my next project. Of course the pay isn’t bad either, and for now, most of what I make is going to continue to go toward Zebra Pit growth.

Whew! That was a lot. Thanks for hanging in there with me! Let’s Celebrate with another cupcake. 😋

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Guest Post: ME/CFS, POTS, Fibromyalgia, Hypermobility, CCI. What’s the connection and is science missing it?

Please help me offer Tracy Hagler a warm and friendly dazzle welcome! Tracy is the author of today’s guest post. A nurse with many of the same conditions as myself, Tracy and I were admiring each other’s work and decided we had to do a blog swap. In this piece, she writes about the onset of her conditions and the interconnected nature of conditions like ME/CFS, Fibromyalgia, HSD/EDS, CCI, along with some studies delving into these connections. I think you’ll enjoy it and find some similarities in our theories! After you read her post, be sure to go and give her blog a like so you can keep reading her posts! There’s a link available below, in her bio.

Without further ado, here is Tracy’s post, originally run on Unspoken Words of the Heart on 7/2/19.

ME/CFS, POTS, Fibromyalgia, Hypermobility, CCI. What’s the connection and is science missing it?

I know I have quite a few readers who battle with me/cfs, pots syndrome, fibromyalgia or Hypermobility Syndrome/EDS. Although, this is a blog to share my faith, I also want to share health updates and things that I’m learning so that we can educate one another.

The one thing I can look back for sure and see is that I’ve always had a very sensitive nervous system, I just didn’t realize it at the time. I was overly sensitive to medications and caffeine. Other people could drink several cups of coffee per day and do fine but a few sips, for me, would make me crazy. From twenty years old and on I had GERD and always reacted to gluten and sugars. I just felt bad after eating them. I just thought all of this was “normal”, at the time. I was always a type A personality. I was a nurse and I worked abnormal crazy hours (16 hour shifts, swing shifts, etc.) When I had time to sit down, well I never would. I always felt tired but wired up, if that makes any sense. I had been working as a nurse for about eight years before I became sick. The year I got sick (2017) was a busy, exhausting year for us (mentally & physically). My fiancé’s Dad passed away In February. We got married in July and my younger brother passed away in a car accident in August. In July I started having a severe pain that wrapped around my hip and into my inner thigh. I couldn’t stand, sit or walk without being in severe pain. It was actually a deep hidden inguinal hernia, with my small bowel protruding through. The hernia was pinching my inguinal and obturator nerves. (We have all heard of sciatica nerve pain, well this is the same excruciating pain only it involves different nerves.) They didn’t find out that it was a hernia until almost a year later. I was out of work and could barely do much due to the pain. (Please keep reading, I promise I am going somewhere with this story.) I had no clue what was wrong.

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I went to a chiropractor for a spine adjustment because at the time no one could figure out that I had a hernia. Everyone presumed that the pain was from, possibly, a pinched nerve in my back. I go to get the adjustment and he uses an adjustment gun on my back and neck and does some deep tissue massage. He worked on me for thirty minutes. I was desperate to get back to work and wanted this severe pain to go away. What I didn’t realize is that my life was going to take a drastic change that night. I wish I could go back and change that day but I can’t. That night I awoke with my spine and neck burning hot and they felt inflamed. I was vomiting, my whole body felt feverish and I was chilling. The next day, I awoke unable to stand up. When I would stand my heart rate would shoot up. I had massive headaches in the back of my head every time I would stand for long periods of time. I couldn’t eat anything and had extreme nausea. I would lose 10 lbs over the next couple of weeks. I called the chiropractor and told him the extreme symptoms and he said I had anxiety and to come in for my second adjustment. That made me mad because it was obvious that something was severely and physically wrong with me and I only wished it was anxiety. But crazy me went back thinking he could fix what had happened. This second adjustment only worsened my condition and I ended up at my moms for a week unable to get up or eat. I thought I might die that week and no one would ever know why it happened. I truly didn’t think I would make it. By this time people probably didn’t know what to think of me. I couldn’t go back to work. I could barely make it to the bathroom. No one had ever heard of an adjustment doing this to someone. But what I have found is that it’s actually happened to a lot of people. They call it “toxic reaction”. But I never got over it.

I developed pots syndrome and months later would come to find out I had me/cfs. Over the next few months, I found that exertion would send me into severe crashes with severe symptoms. Everything was post, several days after an activity. I could see a pattern. I would wake up gasping for air at night, I had air hunger, my nail beds were cyanotic. I had severe orthostatic intolerance (pots), severe heat intolerance, blurred vision, it felt like I had the flu times ten. My spine was sore to touch. The skin on my back felt sunburned and I couldn’t stand the slightest touch. I couldn’t look at lights or phones or tv. I just laid there in complete darkness and felt close to death. I was then diagnosed with me/cfs, fibromyalgia and hypermobility (People with Hypermobility Syndrome or EDS have thinner tissues and often times have hernias at a younger age, which also helps to explain my hernia issues).

I tell this long story because it all makes sense looking back. It seemed like a perfect storm. I do feel like my body had a strong reaction to the adjustment and inflammation set up in my spine that night. It was like my body overreacted and attacked me in order to protect itself (kind of like an autoimmune response). During my sickest times, I had chronic UTI infections that antibiotics did nothing for (8 to be exact). Later they said I had Interstitial Cystitis which can be set off by mast cell activation. I started taking Benadryl nightly and it helped decrease the pain of the Interstitial Cystitis. They checked me for mast cell activation and it was negative but at the time I was taking a daily antihistamine. So I’m thinking that might be why it was negative.

This illness definitely originates, in my opinion, in the spine, brain stem and at the base of the skull. I always feel so much pressure and swelling there especially during a crash. I love to write and sometimes just the effort required for that will cause a crash. This really is a cruel disease with severe suffering (which I am happy to say, has only made me a stronger person). I keep putting my story out there because I’m a minority where my me/cfs was caused by something other than a virus. Although, I have heard of spine adjustments triggering or reactivating viruses in the body. I was checked for EBV and they just said it wasn’t currently active but I had been exposed to it in the past. I also have heard of people getting sick from deep tissue massages because it releases toxins from the tissues into the body. Studies are also finding dorsal root ganglionitis in the brains and spines of those suffering with severe me/cfs, postmortem.

I’m not exactly sure what happened to me that day. I’ve got a few theories. However, the one thing I do know is we all have the same illness. Where science has gotten it wrong for so long, they seem to be on the right track, for the moment at least. The recent stories of people recovering from Me/cfs and Pots after having craniocervical instability surgery (a surgery of the neck) has left me with a lot of questions. Especially, since my me/cfs was triggered by a neck adjustment. It has been found that people with hypermobility or EDS can have laxity in the ligaments that hold the skull up causing instability and pressure on the brain stem therefore causing POTS, ME/CFS and Fibromyalgia. There have been several people that have had CCI surgery done and all their pots and me/cfs symptoms have disappeared. Jennifer Brea, the producer of the Netflix documentary film “Unrest”, also had severe Pots and Me/cfs and is now in a complete remission after CCI surgery. Her Me/cfs was triggered by a virus/infection.

In my case, was I a ticking time bomb? Did it just take one or two more millimeters of instability at the base of my skull to cause me to develop Me/cfs, Pots and fibromyalgia? Or, did my spine set up inflammation that led to dorsal root ganglionitis? I may never know but I will never give up hope that I WILL someday get better. My trigger was a chiropractic adjustment. Your trigger may have been a virus, a concussion or head trauma. All the science behind this is kind of intriguing and it starts to come together after studying on it for a while. It’s like five separate illnesses operating under one specific cause. If we keep telling our stories, hopefully it will help science fit the pieces of the puzzle together and they can find out the cause and develop a cure. Most importantly if you have this illness, don’t give up, there’s still hope. We have a God who is greater than science. Let’s continue to support and lift one another up in prayer!

(This is in no way medical advice and should only be taken as part of my story and personal opinions.)

Resources


Tracy Hagler is a nurse who was diagnosed with ME/CFS, POTS, Fibromyalgia and Hypermobility Syndrome within the past two years.  She started writing a  blog where women can share faith, hope and encouragement. She has become an advocate for theses conditions and shares information and education about them. She also writes on mental health and her Christian Faith. You can check out her blog at Unspoken Words of the Heart.


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In this guest post, Tracey Hagler explores the connections between ME/CFS, POTS, Fibromyalgia, CCI, and Hypermobillity Spectrum Disorders. She talks about the progression and diagnoses of her own conditions, some compelling research and more to put together this thought-provoking post about the interrelated nature of these illnesses.
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El Houssaine Ichen, My Hero!

My Hero is a new series designed to shine a spotlight on a person or group with special needs who dedicates their time to making the lives of other like people better in some way. These people are all heroes who spend their limited energy, resources and time to make the world a better, brighter, or more accessible place for people with chronic illnesses or have special needs. They don’t have to be a spoonie or zebra to qualify. They need only to serve those individuals in their work.


morocco-mapMeet the Disabled Tourist Guide, El Houssaine Ichen, The Zebra Pit’s My Hero for October. Houssaine lives in Tounfite, a remote town in the middle Atlas Mountains of Morocco. Born into a family of 9 children, Houssaine’s family couldn’t afford vaccinations for him and he contracted polio at age 3. As a result, Houssaine’s legs have been paralyzed. At an early age, Houssaine learned to walk using leg braces and crutches. “As I have grown up with this handicap, I do not let it slow me down. I enjoy playing football, trekking and swimming. I am also a keen chess player and like music,” Houssaine tells me in our chats over email.

brown concrete building

Naturally, when Houssaine decided to open his own business as a tourist guide, he wasn’t about to let his disability hold him back. He enjoyed travel because he liked the way it challenged him. When daily life sometimes felt like it was stuck in a rut, travel became the place he tested himself. “It pushes people to their limits and gets them outside their comfort zone,” says Houssaine. He felt compelled to begin helping others with special needs succeed at travel because he wanted to share what he himself felt while traveling. “With traveling, I discovered how resourceful I am when I’m exposed to new places, people and experiences. Maybe it’s finding my way around a busy city, or ordering a coffee when I don’t speak the language. I always feel pride when I finish my trip successfully…It builds my confidence. I wanted to give that to other people with special needs.”

Educated in an institution for the physically challenged run by the British welfare fund “Save the Children,” Houssaine was separated from his family, with whom he is very close, at a young age. In college, he obtained a BA in Modern Art along with additional education and diplomas in informatics. He can speak Tamazight, Arabic, English, French and basic Dutch. While he’s grateful for his education and the opportunities its afforded him, he’s always regretted having to leave home so young and he sees that not much has changed in the way people with special needs are perceived in Morocco.

houssaine-208x300“Despite my academic qualifications, I am aware that many Moroccan companies discriminate against the disabled, an attitude I am campaigning to change at [the] government level by raising awareness of the difficulties faced by disabled Moroccans in the workforce. It is my ambition to develop my own viable tourism business by providing information on accessible tourism for disabled people and persons with reduced mobility.”

In order to help foster awareness, Houssaine has been giving speeches around Morocco, inspiring people to integrate with people with disabilities. “Our society needs to realize that this is a huge problem that many of us are dealing with. We are very capable of being…successful employees, or even employers, and being able to provide for our families. My expectations would be to stop the discrimination against people with special needs and for businesses to hire based on qualifications.”

El Houssaine Ichen, My HeroHoussaine proves every day just how industrious people with special needs can be. Since 2013, Houssaine has guided nearly 100 guests on trips throughout Morocco. The Disabled Tourist Guide offers his guests much more than just pre-planned trips, though he has plenty of recommendations for wonderful and exciting adventures both on and off the beaten path. Before taking someone on a tour, he speaks with them extensively about their needs and abilities to ensure that he understands how to accommodate both their wants and needs. Houssaine is committed to making everyone’s trip easier, more comfortable and unforgettable.

I asked Houssaine how he might go about helping someone with an invisible illness that has chronic fatigue, heat intolerance and sun sensitivity. In a country like Morocco, situated on the Mediterranean and partially located in the Sahara Desert, I feared I might be asking too much. It turns out Morocco’s climate is more diverse than I realized. Houssaine was all too happy to educate me about the terrain, climate zones and seasonal proclivities of Morocco, ensuring me he has what it takes to help guests choose the ideal time to visit this gorgeous and wondrous country. It appears there are certain times of the year you could visit almost any region during more temperate periods, though on where and when, specifically, I’ll leave to Houssaine to guide you.

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Whether you’re looking for a coastal Mediterranean holiday, a trek through the Atlas Mountains or a tour of Casablanca, Houssaine assures me spring is the most beautiful time of the year to visit, when the landscape is green and lush. For more information on tours and travel in Morocco with The Disabled Tourist Guide, be sure to visit Houssaine’s website.

Of course, Houssaine serves anyone who would like to utilize his services regardless of ability. And if you’re concerned about him keeping up, don’t. You might be surprised at how difficult able-bodied people sometimes find it to keep up with Houssaine!

Follow Houssaine:

Facebook 50pcx Disabled Tourist Guide

twitter 50pcx@guitarist_man


The Zebra Pit wants to recognize anyone who goes the extra mile for others despite having challenges of their own. The work can be either paid or volunteer, great or small. If you know someone who should be recognized (even yourself), send an email and let us know about them!

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MCAD: Prevention & Avoiding Triggers

Like most disorders and syndromes that fall into the spoonie category, mast cell activation disorders (MCAD) are incurable. MCADs are often caused by genetic mutations, whether they’re primary like systemic mastocytosis, or secondary (comorbid), which is often the case in mast cell activation syndrome (MCAS). In my last article, Are Most Spoonies Suffering from MCAD, I talked about how research is pointing toward  the likelihood that most people with EDS, ME/CFS, Fibromyalgia, IBS, multiple chemical sensitivity, interstitial cyctitis, and POTS are likely suffering from some form of an MCAD. This post is the first of several where I will address how to treat this complex set of disorders, beginning with prevention and avoidance of triggers and allergens.

Since MCAD can affect every system in the body, the symptoms of MCAD are many and varied. To what and how a mastie reacts can vary widely from one mastie to the next. Mast cells exist in every tissue, from bone marrow to organs to the skin. They can affect blood pressure, heart rate, digestion, breathing, and the musculoskeletal system. They can cause a variety of headaches, from sinus to tension to migraines to cluster headaches. They affect energy levels, metabolism and the immune system. They can even affect hearing and vision and cause peripheral neuropathy and other neurological complications. A three prong approach is best for treating the symptoms of mast cell disorders and includes the preventative measures covered in this article, along with drug therapies and dietary changes.

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Prevention

The first and most important line of defense for someone with an MCAD is to determine what triggers their mast cells to become active. When mast cells become active, they release a number of chemicals in the body that can wreak havoc, such as inflammation causing cytokines, allergic reaction causing histamine, among many others that can play havoc with the body. Triggers can be substances which cause an allergic reaction, a substance that acts as a histamine liberator or any stimulus that excite the mast cells into responding inappropriately, such as stress or vibration. It is important to know exactly what you’re allergic to and what substances are triggers so you can avoid them and prevent future episodes and flares.

MCAD and Allergic Reaction

While many of the reactions masties have are due to their mast cells rather than genuine allergies, it’s still very important to understand what a genuine allergy is and what a trigger is. To determine genuine allergic reactions in a person with an MCAD, blood tests must be used, rather than the skin test. Most masties are going to show a reaction to skin tests which could be due to a saturation of histamine or build up of mast cells in the skin that are quick to activate rather than a true allergy. Once your blood is tested and you’ve determined your true allergies, these should always be avoided and it is somewhat rare that these will change.

Substance Related Triggers

MCAD Triggers; Heat, cold, temp changes, stress, fatigue, exerccise, friction, vibration, surgery, food, beverages, alcohol, meds, venom, odors, infections

When reacting to things in which you are not truly allergic, these are called triggers. These substances and environmental factors must also be avoided, but may eventually be safe again, once the body has been properly treated and is no longer in a state of histamine overload. This can make prevention to exposure tricky, but still possible. As soon as you have a reaction to something and determine its cause, the source needs to be strenuously avoided, as repeated exposure can increase the severity of the reaction and therefore the risk of anaphylaxis. Once treatment has begun, periodic testing can help determine when it’s again safe to risk regular exposure.

For this reason, it is a good idea for masties to keep a journal of everything eaten and experienced. It doesn’t really matter if it’s a food you’ve eaten your whole life or if you eat it every day. With a MCAD, the mast cells can decide something is a threat at any time, causing them to release their noxious cocktail of woes. Since symptoms can sometimes be delayed or somewhat muted until you’ve been exposed to something over several days, having a journal to look back on can be a very useful tool. Sometimes utilizing the low histamine diet is necessary to rule out food triggers, which will be discussed in my final post in this series.

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If the substance you’re reacting to is airborne, wearing a respirator mask and/or avoiding environments which contain known allergens are all ways to prevent exposure. If avoidance isn’t possible, a respirator mask is the best answer. Most masties wear either NIOSH N95 or N99 masks which are certified to filter out microscopic particles. While most masks don’t filter out 100% of the irritant, when properly fitted, they significantly reduce exposure. There are a wide variety of disposable and reusable masks on the market today and they are actually used regularly in cities where air quality is a concern, such as China and Japan. I use a vogmask, which is comfortable, reusable and washable.

Using a mask may seem extreme and uncomfortable, but for many masties, it’s the only way we can leave our homes. Perfumes, colognes, many body products, cleaning products and air fresheners are triggers for me, so I generally can’t be around other people, visit anyone’s home or shop in stores if I don’t wear a mask. I’ve become highly reactive to pollen since this spring, too. Suddenly nowhere is safe. If the pollen counts are higher than a two, I have to wear a mask when I’m outdoors, even if I’m only going to be out for a minute or two. Otherwise, it takes me days to recover from a pollen exposure. For me, a mask is the difference between being a prisoner in my home and being able to buy groceries.

Of course the great outdoors isn’t the only place where pollen lives. Pollen is comprised of tiny particles which are designed to stick to things for maximum spread. It loves to hop a ride on our shoes, clothes and skin. Here are a few tips for keeping pollen outside of your home:

  • Keep your windows closed, especially on breezy days.
  • Leave your shoes at the door to avoid tracking pollen into your home
  • Change your clothes when arriving home somewhere other than primary living spaces
  • Always wash anything that’s been worn outdoors before wearing it again
  • Shower when returning home or before bedtime after going out
  • Install a HEPA allergen filter in your HVAC system with a rating of 10 or higher and change it regularly
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If you have dust mite allergy like me, it’s not exactly practical to go around wearing a respirator mask 24/7, so a different approach is usually warranted. The solution? Develop a love for cleaning. Masties and dust mite allergy sufferers cannot afford to be slackers:

  • Use allergen covers on your mattress and pillows. Remove and wash at least monthly
  • Wash your bedding weekly in hot water to ensure dust mites do not survive
  • Dust weekly. Be sure to you get the top of your headboard, fans and those other hard to reach spots regularly to keep dust from building up
  • If you have carpets, vacuum weekly with a HEPA filtered vacuum
  • Vacuum cloth furniture regularly
  • Sweep and mop hard floors (which are better for dust mite allergy than carpets)

If you’re allergic to a lot of cleaning products, try switching to natural equivalents. Two of my favorite cleaners are vinegar and baking soda, but I also use a few natural, organic commercial cleaners, as well. When you find something that works for you, stick to it. Bouncing around from one brand to the next could increase your likelihood of reaction. At least it does mine. If you absolutely must use something that you might react to, be sure to use gloves and a mask, avoiding contact with the skin and inhalation of any fumes.

These are just a few examples of ways to protect against common allergens and triggers. No matter what allergen you’re trying to avoid, prevention is a great way to start. It’s easy to find great common sense tips online for limiting your exposure to almost any allergen or trigger. One I purposely didn’t cover is mycotoxin allergy. It’s complex and difficult, but there is a lot of great info out there to be had on how to eliminate mold from your home.

Non-Substance Related Triggers

There are a number of triggers which aren’t allergens or substances, such as emotional and physical stressors, fatigue, infections and vibration, just to name a few. Not all of these are a trigger for every person with an MCAD, however many are quite common and masties should always pay attention to how they feel after immediate exposure to anything that’s a known trigger. Knowing and making choices accordingly can help save you from a flare, or from being stuck in one long term.

While it’s not always practical or even possible to avoid something like emotional stress, if you’re a mastie, you have a valid excuse to say “I can’t deal with this,” when the pressure is getting to be too much. Stress may not be good for anyone’s health, but for a mastie, it can lead to a serious long term flare. Stress, whether it be mechanical, emotional or environmental, is almost always a trigger for every person with a MCAD, so it’s important to manage stress through diet, exercise and other reduction strategies. If you have a mental health issue, it’s especially important that this be addressed and treated, as MCAS can cause anxiety and depression. Speaking as someone who has complex PTSD and MCAS, the interplay between MCAS and mental illness is its own special circle of hell.

If you have issues with vibration, which tends to excite mast cells and can cause activation, most likely you will decline with long car rides on the highway, boat trips, plane rides, or concerts. You may find things like motorcycles or ATV’s absolutely unbearable. The use of a TENS unit or massager, while often relaxing for muscles, causes itching, redness and swelling, or sometimes even nausea, fatigue and blurred vision. Some vibration may be tolerable, while a two hour concert or 10 minute motorcycle ride could put you to bed for several days. Again, it all depends on the sensitivity of the individual.

Finally, it’s important to understand that things like exercise intolerance are very real and at times it may be best to avoid it altogether: However, gentle exercise and physical therapy is usually fine. In the case of exercise, starting out at the right level and slowly working your way up to slightly more challenging exercises seems to work best; usually taking baby steps. If you have dysautonomia, which usually goes hand in hand with MCAD, you also want to monitor your heart rate closely and avoid exercising in an upright position.

With non-substance related triggers, it’s often a matter of finding your threshold and working within those parameters when it comes to MCAS, as many are things which cannot be entirely avoided. It’s also a matter of trusting and listening to your body. Sometimes it speaks loudly and others it likes to whisper. Vigilance is invaluable. If you react poorly to something, you’ll at least experience some level of fatigue or mild symptoms. Not every reaction is going to be as obvious as welts or anaphylaxis. Things are rarely cut and dried with these disorders, so it’s up to the patient to ensure their world and how they interact with it is best suited to their specific quirks.

MCAD: Prevention & Avoiding Triggers