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Guest Post: Making It As a Spoonie Girl Boss

It’s been a while since the Zebra Pit has added to our Disability and Work series. I enlisted the help of spoonie entrepreneur, graphic designer and blogger Kirsten, who owns Graphic Organic and works as a freelance graphic designer. Kirsten was kind enough to lay out a few of the things she found instrumental to building her business and discusses a little about how she manages the needs and constraints of her chronic illness with her work. Please help offer Kirsten a warm Zebra Pit welcome. I hope you enjoy her invaluable advice as much as I!

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Are you chronically ill and looking for ways to work from home? Did you have to give up your full-time job? Are you good at a specific skill? Do you have a lot of knowledge about a certain topic? Sounds familiar? Then keep on reading…

I’ve been running my business Graphic Organic for two years now. Graphic Organic is an online store with my own designs on sustainable clothing and stationery. I’m also a freelance graphic designer and I love writing articles for my blog.

I’m not an expert whatsoever, nor am I able to fully make a living with my business. I don’t have the secret ingredient for becoming a success overnight. I started out knowing nothing about the entrepreneur life. Graphic Organic is slowly growing every single day and so am I as a girl boss. I’m here to share my story of how I started my business and things I’ve learned so far.

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1. No matter how much you prepare you’re never ready, but it does help.

You will learn most things along the way. Even the most successful business person will tell you they find out new things every day. Owning a brand has its risks, no matter how good you prepare, you’ll realize soon you can’t control everything.

Nonetheless, I’m glad I did go to a business course before opening. I didn’t have many people close to me that are entrepreneurs and I had no idea where to begin.

In business class we studied the basics of marketing, insurances, laws, how to make an invoice, taxes, etc. I know some people make it seem “easy” online to start as an entrepreneur but a lot of them are technically doing things against the law. This doesn’t have to lead to serious problems now but it’s important to know your rights, especially as your company grows.

2. Invest, volunteer and support.

Kirsten spending time with a beloved companion.
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In order to grow your brand you have to be very passionate, otherwise you will give up in an early stage. Believe me, there have been multiple times when I wanted to just stop because I was so tired of working for free.

Every little money you earn goes needs to be reinvested into your business. Whether that is paying your suppliers, materials you need or your accountant. Advertising and promoting your business is not only hard work but also expensive. Running a business is so much more than the service or products you offer.

I know it sometimes feels like you are constantly giving and not receiving. Money will come into your life but you have to be patient.

Doing volunteer graphic design jobs have payed me in experience and more work to put on my portfolio. Thanks to the work I did for free, a client reached out to me because they liked my style.

Giving away products made people talk about my brand and therefore I gained new traffic to the site who subscribed to the newsletter or follow me on social media, which attracted them later on to actually purchase something.

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Another thing I noticed is supporting fellow entrepreneurs in your niche is so important. You know about yourself how many hours of work you put into your project, a super quick and easy thing to do is simply let someone know they’re doing a great job. Think about how it makes you feel when you get a compliment. Feels good right?

Why would you go to a supermarket with four floors for jam when your neighbour makes it themselves in a local establishment? If you don’t have money to spend now, you can easily support by just telling people about it, hang up a flyer, share on social media or a simple thumbs up and a nice comment help to gain followers.

Try to look at your business as something unique, even if people try to copy it, they can never be YOU. There is a place for everyone. Don’t look at it as much as a competition but a positive look and genuine support can help you a lot further.

3. Your health stays a priority.

Last but not least, your health should always be your first priority. My chronic illness is not going on a holiday when I’m in working mode. The chronic pain and fatigue is always with me. Even though we all know it can be so nice to just focus on something else and forget about being ill, it can be toxic too if you put self care at the bottom of your to-do list.

The freelance work I did has always been for someone who understands my health issues. They know that I have a slower pace than the average graphic designer and that sometimes I’m stuck in bed and it’s possible appointments have to be rescheduled. Strict deadlines are a no go for me.

This makes it a lot harder to find clients but I think it’s important to not promise anything you cannot realize.

When I receive an order, I give myself 1-3 business days to package the product(s) and bring the parcel(s) to the post office. That way I’m not getting stressed out when I’m having a flare.

I know all too well what it’s like feeling trapped in your body and wanting to do things because you feel so inspired but you can’t. “You can’t pour from an empty cup”. I’m working hard on planning in rest, just as I plan in work and activities.

I make mistakes and I’m gonna keep making them. But I’m growing as a business woman and as an individual too. Remember that taking care of yourself is a skill just as much as making jam is. 😉

Do you have a business yourself? Are you thinking of starting one? Let me know in the comments!


Kirsten is a graphic designer, blogger and the founder of Graphic Organic. She’s 23 years old and lives with fibromyalgia and M.E. To learn more about Kirsten, visit her website: https://www.graphic-organic.com

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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.

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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.

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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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When Superman Gets Sick

I have always held the mistaken belief that I’m Superman. No matter how sick I felt, no matter how much pain I was in, no matter how much stress and anxiety I was hit by, I carried on as if I was fit as a fiddle. I have always taken a great sense of pride in being the rock. The guy who could be counted on no matter what. That isn’t the case any longer. I have to face facts: I have some fashion of chronic illness, and I am a superhero no more; at least in the physical sense of the term.

I’ve suffered from chronic pain and illness for most of my life, but never to this extent. As I have gotten older, particularly over the last five years, fatigue, pain, and feeling lightheaded almost to the point of blacking out have made for the most oppressive of companions. Now, all of that may finally becoming to a head. Currently I’m on medical leave of absence from my job.

I have been getting extremely lightheaded at work to the point where I thought I would black out if I didn’t sit down. The more I exert myself, the worse my symptoms become. I get lightheaded to the point of disorientation. When I get to that point, I feel as if I’m either going to float away or come crashing to the floor. Since gravity is the unyielding bastard that it is, I’m fairly certain that crashing to the ground is my only option. Seeing as constantly going down to the floor in a haze is not really a valuable work trait, Michelle and I decided it was time for another leave of absence.


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Another leave you ask? Why yes, this is my second leave since I started this job a few years ago, both for the same symptoms. During the first leave and first round of tests, nothing new was determined with the exception that I have Premature Ventricular Contractions (PVC), which means one of my ventricles throws in extra heartbeats erroneously. My cardiologist put me on metoprolol, patted me on the head, and sent me back to work. Since then, I’ve been doing my best to hang on. I tried so hard to manage my symptoms. I also became an expert in manipulating our companies attendance policies. Through my efforts, I managed to squeeze another two years of working so far, until a little over a month ago.

As of right now, I am on leave until mid November, why we try to figure out what’s going on. The common theory among my doctors is that I may have POTS. However, a tilt table test is needed to confirm this, and scheduling the test seems to be quite the difficult task for my medical team. For the interim, I seem to be reclining for the moment in diagnosis limbo. Since I’m not an exceptionally bendy person, limbo doesn’t really work for me. If I can’t work, then I need to find other things to occupy my mind. I tried occupying it with worry and anxiety: That didn’t go so well!

While the ‘David Curtis Health Tour: Volume 2’ seems to be stuck in neutral, I plan on using my down time helping out with the blog. I hope to be posting more articles, as well as contributing to the Zebra Pit’s social media presence. I plan as learning as much as possible in order to contribute as much possible. Hopefully, you the reader will find my writing and opinions to be of the same high quality that you have come to expect here. As information trickles in as to what my diagnosis is, I’ll keep you posted.

Ta for now!


David Curtis lives in Florence, KY with his wife Michelle, 2 Russian Blue cats and his many fish. David manages the pet department of a prominent retail chain in addition to caring for his wife, pets and home. In his spare time, he enjoys reading, exploring history, watching football, sci-fi, fantasy or comic book shows and film, along with fighting for truth, justice, and the human condition. Much like Tyrion Lannister, he also drinks (coffee) and knows things.

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7 People with Chiari and CCI Share Their Stories

To complete our series on Chiari malformation and Craniocervical Instability, I wanted to share more of the interviews that I didn’t have the opportunity to use during my exploration of the Issues of Diagnosis and Treatment. These interviews are great supplemental material to that discussion and help to see the problem from the perspective of those who have the condition. We wrap it up with my own information, as representation of what I suspect are hundreds of thousands of people suffering from undiagnosed forms of craniocervical junction disorders and why I believe I have one. While this group is by no means insignificant, ultimately none of us will know what affects us until finally put through proper testing, as described in this post.

7 people share their journey with CCI, or Chiari Malformation, from diagnosis and treatment, to symptoms and barriers to care. A special Zebra Pit series in honor of Chiari Awareness Month

This is the third post in our Chiari Awareness Month Series: The first two are available here:

Out of respect for the privacy of participants, I am only publishing their first names and general location. Some people preferred to use a pseudonym, which is denoted with an asterisk (*) next to the participant’s name.

Name: Jackie

Location: Sacramento, CA

Time from onset of symptoms to diagnosis: 25-30 years

Jackie underwent posterior fossa decompression with craniotomy, C-1 laminectomy and duraplasty in November, 2017. Prior to surgery, Jackie suffered severe head pain, persistent weakness in her right arm, and by 2015, extreme dizziness, lightheadness and near syncope that was caused by orthostatic hypotension that had no other cause. It was believed that Jackie’s Chiari malformation which was classified as Chiari 1.5, was congenital in nature, due to the small size of her posterior fossa, which caused everything to get pushed forward. When asked if she considered the surgery a success, she noted “For me the procedure was extremely successful. It eliminated my neck pain and chiari headaches completely. It also completely cured my chronic hiccups and motion sickness (which I wasn’t expecting). The only thing that remains is the orthostatic hypotension which is less severe. I manage that with increased salt intake only.”

Despite the successful outcome of Jackie’s surgery, achieving it was a bit of a feat. “My primary care doctor sent me to a neurologist who ordered the MRI that revealed the Chiari. The neurologist completely blew it off, insisting it couldn’t possibly be causing my symptoms. He thought my problem was “vestibular migraine.” Even though my headaches never completely fit the migraine profile, that’s what doctors assumed I had. I had to keep trying to find the cause of my dizziness, and it took until September 2016 to pinpoint orthostatic hypotension. It was tough navigating the different workups. Once I was able to get two neurosurgery opinions, things got much easier. I was pretty lucky in that I had good insurance (a plus in the United States) and I had access to a brilliant neurosurgeon at Stanford University.”

Jackie’s case demonstrates how even when Chiari is clear cut and easy to diagnose; the conclusions of doctors who aren’t really qualified to make a determination about intervention, but who do anyway can be a huge obstacle to intervention and treatment of Chiari. Lucky for Jackie, she didn’t let his ill-advised treatment plan (to do nothing and assume her problem was something else) stop her from seeking treatment elsewhere. I also feel it’s important to note that Jackie’s doctors were smart enough to evaluate her for the presence of hypermobility before making a final determination on how to treat her.

Name: Christina

Location: South East England

Time of Symptom Onset to Diagnosis: Unsure.

Christina has EDS related Chiari malformation. It took Christina 30 years to get a diagnosis of EDS. She had an upright MRI because of awful pressure headaches. A horizontal MRI missed the presence of a malformation, but she persisted and was given an Upright MRI at the Medserena in London, which finally confirmed the diagnosis. To date, Christina hasn’t had any procedures. For her Chiari, if symptoms continue to progress, she will need surgery: However, Christina’s chiari malformation and symptoms are complicated by Craniocervical Instability. The procedure which she needs, a spinal fusion, isn’t available through UK’s National Health Service, forcing Christina into the position of raising funds to so she can have both surgeries with a doctor in Spain.

Name: Maura

Location: Newark, DE

Time from onset of symptoms to diagnosis: unknown

 Maura was diagnosed with Chiari I in 2007 at age 6 via a traditional horizontal MRI. “I had a decompression shortly after diagnosis and had significant relief for 8 months. After that symptoms returned but slightly differently, so I had a full decompression. Turns out it was craniocervical instability that caused the symptoms to return after the first decompression so the second decompression was ineffective.” Despite this setback, today Maura’s only residual symptoms of CCI and Chiari is that she struggles with fine motor coordination. In additiona to chiari I and CCI, Maura lives with hypermobile Ehlers-Danlos Syndrome, Gastroparesis and POTS.

In Maura’s case, had she been evaluated for the presence of hypermobility like Jackie was, it’s conceivable she would have been able to avoid two separate surgeries. It is unlikely the condition developed in such a short span as eight months.

Name: Kaitlyn

Location: Worthington, KY

Time of Symptom Onset to Diagnosis: Unsure. Kaitlyn had symptoms from early childhood that were ignored due to similar familial symptoms until an injury in high school revealed her condition.

Kaitlyn was diagnosed in July of 2006 with Arnold Chiari Malformation type 1 via traditional horizontal MRI following her cheerleading accident. Treatment for Kaitlyn came quickly, being performed in a matter of months after diagnosis. She had posterior fossa decompression surgery for a 2.2cm herniation. During the surgery they performed a laminectomy of her C1 to create more space in the spinal canal, opened the dura, cauterized some of her cerebellar tonsils and inserted a stent for cerebrospinal fluid drainage.

Kaitlyn considers her surgery successful and has no plans for further intervention: However a number of her pre-operative symptoms remain. “I have debilitating [hemiplegic] migraines that replicate stroke symptoms, neck stiffness, neck pain, trouble swallowing and my head shakes.”

Kaitlyn notes location and lack of knowledge to be the biggest obstacle in her ongoing care. “I live in a small town in Kentucky and the doctors around here have little to no knowledge about Chiari Malformation. There have been doctors [who] Google ‘Chiari malformation’ in front of me and then act like experts. Recently I have traveled to Cleveland Clinic and Johns Hopkins to meet with doctors who were knowledgeable about Chiari Malformation. Being able to meet with a doctor who knows about Chiari Malformation has been the hardest part of this journey.”

Name: Martha

Location: Kent, England, UK

Time of Symptom Onset to Diagnosis: None

Martha’s Chiari I malformation diagnosis for Chiari was incidental. At the time, she wasn’t experiencing any symptoms. That was in 2012, but lately she’s found things have changed. “I very recently have developed tingling in my lower jaw/around my mouth, chattering of the teeth, TMJ type pain and severe headache mostly on the right side.” Martha is currently waiting for another neurology consultation to discuss her new symptoms and next steps. During another MRI for her symptoms in 2017, they diagnosed her with possible facet joint compression due to posture, which has been helped by regular physiotherapy. In addition to Chiari, Martha has Ehlers-Danlos Syndrome, Fibromyalgia, hypothyroidism and lipedema.

Name: Jennifer

Location: Fairhope, AL

Time of Symptom Onset to Diagnosis: 15 months

Jennifer has Chiari I malformation which was discovered through MRI, but she couldn’t recall which kind. In addition to Chiari, she has pseudotumor cerebri. Jennifer had posterior fossa decompression, which failed. Multiple procedures, from nerve blocks to a spinal stimulator were attempted in an effort to reduce her pain, but none were sufficient. Her final surgery in January ’18 entailed a fusion of C1-3 at Johns Hopkins.

 Today, Jennifer regrets all these attempts. “If I had to go back, [I] would not have any of the surgeries or procedures. The 8 years that I was sick was nothing but obstacles. It was a nightmare. I almost took my life last Halloween, because that final surgery just about broke me. We have struggled financially. It’s been hell for my children, and it destroyed my marriage. I’m now a single mom and rebuilding my life from nothing.”

7 people share their journey with CCI, or Chiari Malformation, from diagnosis and treatment, to symptoms and barriers to care. A special Zebra Pit series in honor of Chiari Awareness Month

Since Jennifer has given up on surgical intervention, she lives a different sort of life now.

“When I walked away from doctors and pharma last year, I really, really did. Makes me feel icky to even look at medical stuff. None of the surgeries or procedures helped me. They just made me worse. I got off of pharma and trained myself to process pain in healthy ways. Found the app, Curable, super helpful, and I started CBD oil, which began healing the damage to my cerebral cortex.

“My pain level varies with the weather, and today it’s kicking my ass. In another month or two, I may have a totally different story. I’m currently in spasm and probably functioning at 6-7… have to slow down to a snail’s pace during the summer… and that’s very hard on me mentally, because I often feel like I missed out on 8 years and don’t want to waste time.

“I’m in as much if not more pain, now, compared to 2013, but I don’t process pain the same. I’ve dealt with the emotions that came along with pain… guilt, fear, disappointment, shame, etc. So, now pain is just pain. All humans function in some type of pain, whether physical or emotional. It’s up to us to find a healthy way to walk through it.”

Name: Rose*

Location: Chicago, IL

Time of Symptom Onset to Diagnosis: Unsure.

Rose has a somewhat unusual story in that she was first diagnosed with Chiari at birth, but while the surgeon discussed her hydrocephalus and the intervening shunt they would place, he failed to report and explain that she also had a Chiari malformation.  When she was diagnosed in 2004 with Chiari, it came as a total surprise to her. It wasn’t until after that Rose discovered the paperwork in her parents’ records, which briefly mentioned the diagnosis.

The onset of Rose’s symptoms are hard to determine due to a cascade  of health problems that probably coincided with onset. “I started having problems that I thought were allergies about 9 months before. Then in September I had a shunt failure. I was officially diagnosed June of 04 through the use of traditional head/ abdominal CT, MRI and x-rays. There was still concern that the shunt was failing again. Decompression was done June of 2004, after 3 shunt revisions had been performed.

“[I] haven’t needed any other surgeries for that. My symptoms after surgery were stable, despite a six month recovery.” In addition to Chiari, Rose was diagnosed with Ehlers-Danlos Syndrome in 2010 and developed POTS a few years after her Chiari treatment, so while she’s had favorable outcomes to her chiari, she still struggles with many other symptoms.

Name: Michelle

Location: Cincinnati, Ohio

Time of Symptom Onset to Diagnosis: 10 Years and Counting

I believe my own story belongs here like that of many others. While I do not have a diagnosis of Chiari or CCI, I have symptoms consistent with CCI. My earliest started in my early 20’s, when I started passing out every time I tried to extend my neck backwards to look up. My symptoms have compounded over time and I struggled the most over the last ten years with the following symptoms, which have fluctuated over time; severe head and neck pain, tremors, feeling like my head was simply going to drop off, occasional speech impairment, significant impairment of cognition and memory, weakness in my arms, dizziness, difficulty with my fine motor skills, tinnitus, insomnia and depression. I have gone through jags of vomiting for days to entire weeks due to my head pain and go through periods where I get hiccups several times in a single day.

As I explained in this post, like many of the men and women who are absent diagnosis despite such strong symptomology, I do not have a diagnosis because my malformation doesn’t become apparent until I am in the upright position or my neck is extended and flexed and the only testing available to me is a traditional MRI. Despite my request for an upright dynamic MRI or flexion and extension MRI, I have been told by multiple neurologists that “upright MRIs don’t work” or “I have no idea how to order that test,” or “let’s see what we can do about this in other ways,” which usually entails failed drugs with side effects too great to bear, attempts at nerve blocks, and other unsavory options like botox.

7 people share their journey with CCI, or Chiari Malformation, from diagnosis and treatment, to symptoms and barriers to care. A special Zebra Pit series in honor of Chiari Awareness Month

Another EDSer in my hometown had to go to New Jersey to be treated by a surgeon who first ordered and read her MRIs through email for a fee. Without doing so she would still be living with her symptoms and yet we both live and go to the best teaching hospital in the area, where one would hope the doctors would be aware of the most cutting edge techniques.

Recently, I had a lumbar puncture to relieve the pressure my CSF was causing. At this time, the source of my increasing pressure is considered “idiopathic” or of unknown origin, but I feel strongly that there is a cause that could be easily determined with the proper test. Removing some CSF fluid helped initially with my tinnitus, light sensitivity and positional headaches, but they have returned in just a matter of a few weeks and I feel it is likely the next steps will be a shunt.

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My symptoms have fluctuated over the years and I feel I’ve made good headway in shoring up my neck through physiotherapy and excessive rest. Still, my neck occasionally slides out of joint and that familiar, unbearable pain returns. One of my uppermost vertebrae now has so much play in it, I can move it freely with only a gentle push, but for whatever reason, it hurts me much less and I have greater range of motion than I used to. Still, my head pain persists and I have to take daily abortive medications for migraine and limit the amount of time I spend in upright positioning. Even sitting in my recliner can cause a nasty headache that’s impossible to relieve without lying flat. 

While I want to know if Chiari and/or CCI are the cause of my misery, I am not at all sure I would agree to surgery, so I haven’t contacted an expert outside of my area for consultation. I may yet, depending on the evolution of my symptoms.

During the course of my interviews, I had no less than a dozen people come forward with similar stories and I see others on my friend’s lists, among my followers and in my support groups who suffer with these symptoms and also suspect strongly the cause to be the same. Like me, these people have neither the means nor the access to do the proper testing. My belief is that Chiari and CCI contribute heavily to the missing millions of ME/CFS and is largely occupied by undiagnosed people affected by EDS. I feel certain one of these conditions is indeed responsible for the years I spend in bed, barely able to function and fear regression. Though I treat my symptoms well through the use of diet, exercise and supplementation, my life is greatly affected by this condition, which I’ve come to privately term “the condition that shall not be named.”

Have your own story to tell? Please add it in the comments. This story is far from over and the more patient voices who get heard the better.

As always, thanks for reading. I hope the stories of people with Chiari and CCI have helped you to understand firsthand what it’s like to live with these rare conditions. If you’d like to know more about these conditions, please take a look at the other posts in this series meant to bring awareness to the issues of Chiari, CCI and craniocervical junction disorders overall.

For More Patient Perspectives on Chiari and CCI, check out these posts:

Resources:

All interviews were conducted through internet correspondence from September 5-13, 2019.

An eighth story is also included, one of a person who can't achieve diagnosis for clear cut symptoms of a craniocervical junction disorder and EDS, myself. Learn what factors prevent diagnosis and how people with Chiari and CCI live before and after surgical intervention of their condition.

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Going to the Emergency Room as a Chronic Illness Patient (and How to Make the Experience Better)

I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…

Going to the Emergency Room

There are several reasons why people with Chronic Pain in particular hate going to the ER.  Here are some of the top reasons that have been shared with me over the years.

1. Fear of Being Labelled a Drug Seeker

This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.

You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!

If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.

2. Fear of Needing More Pain Medication

You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.

Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?

The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!

3. Fear of Being Out of Our Comfort Zone

I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.

I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.

4. Fight or Flight Reaction

If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.

For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.

It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.

5. Wondering if My Pain IS Legitimate

When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.

Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!

Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.

It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.

By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.

Ways to Improve Your Emergency Room Visit

There are several things you can do in advance to help improve your visit to an Emergency Room.

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1. Make Sure You Have a Regular Family Doctor

Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.

What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.

2. Try to See Your Family Doctor First

If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).

Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.

3. Get Your Prescriptions Filled by the Same Pharmacy

One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.

4. Bring a List Of Your Medications with You

At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.

You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.

5. Co-operate with The ER Personnel

This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.

Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.

Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.

Conversations with Emergency Room Doctors

For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.

Speak Up!

I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.

I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.

One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.

I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.

There Is Always Hope


Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com.  She also writes for The Mighty,  PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 


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There are many fears and anxieties with facing the Emergency Room when you have chronic illness. Find out why people with chronic illness often have a hard time going in, and steps you can take to overcome these fears and have a better experience dealing with ER doctors in this post from Zebra Pit contributing writer, Pamela Jessen.