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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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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.


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  She also writes for The Mighty, 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.
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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.

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.)


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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Pop Sockets: Safe, Convenient, & Awareness Raising

Please note this post contains affiliate links. Thank you.

Have you ever used a pop socket on your smart phone or tablet to decrease hand pain? I’ve seen them around for a few years and was curious, but I never knew what they were called or how to find one and I was very skeptical of how well they’d actually hold up or whether or not my phone would still fit in my pocket.

Then my husband had a meltdown and broke his phone. I was pretty angry because I’d been needing a phone for a while and was holding off to try to save money, but I couldn’t say anything or really hold a grudge about it. My meltdowns have cost us a computer, a big screen TV and an odd assortment of other electronics over the years.

Ironically, a guitar is one thing I’ve never smashed

When my husband kept insisting he take my old phone and get me something new, I wasn’t feeling it. It didn’t seem fair. We’d replaced the computer and TV I’d destroyed because frankly we can’t live without our electronic babysitters even if they do frustrate us into punching, throwing or, during an especially powerful, anxiety fueled meltdown, stomping a flip phone into oblivion in the parking lot just before a psych evaluation mandated by the Social security administration (me, not him).

I will always wonder whether the psychiatrist witnessed that and if it contributed to securing my SSDI. I’m not proud of these things, but I’m finally starting to own them and give up the shame that’s consumed me for decades over my inability to control these outbursts. Realizing I’m just your everyday normal neurodivergent, rather than a fucked up neurotypical has gone a long way to quelling the shame spirals I once fell into whenever these things happened.

We looked at used phones and couldn’t manage to make anything come through. We headed over to Verizon drunk on Avengers End Game victory, just to see what they could offer. Somehow I ended up walking out with a Galaxy S10e, while my husband got a downgraded galaxy version for free. It only brought our bill up a little and we didn’t have to pay anything up front, so I was basically happy.

The benefits of pop sockets, which come in a variety of awareness designs for many many chronic illnesses, such as EDS, ME/CFS, Fibromyalgia, Gastroparesis, Chiari Malformation, Lupus, RA, and so much more!

Only the phone is smaller than my old Galaxy Note 5 and even with a big heavy case on it, it didn’t feel like anything for me to hold onto and it was still too big to work it with one hand. So when I was given a freebie pop socket at pride, I got to see what all the hubbub was about.

They’re fairly simple. Closed, they look like a button that sticks up from the back of your phone by about a half inch. Pull on the button and it extends twice, creating a space to slide your fingers in on either side, creating a better, easier handhold no matter what position you’re in (I love mine most when laying in bed). It makes the phone much more stable and secure in your hand while allowing you to work the phone with your thumb while you’re holding it. You can also use the extended pop socket as a stand, so you can watch a show or read an ebook handsfree. The only problem with my little freebie pop socket? It came off in a few days!

When I decided I wanted one bad enough to try another, I remembered the cute little pop socket I had listed among Amazon awareness products on my What is EDS post, so I found it and decided to buy it despite three major concerns:

  • Unlike the first, would it actually attach to my case for longer than a few days? With my tremors, poor proprioception and tendency to drop things, meltdowns are the least of my worries regarding phone breakage. I definitely need to be able to use a case.
  • Also, would it still fit in my pocket or other tight spaces without getting broken?
  • Finally, would it last?

Despite my concerns, I moved forward with my purchase. Having the first for less than a week convinced me they were too good to do without, even if the adhesive wasn’t worth the plastic they put it on. I could reach most of my screen with my thumb, I could relieve the pressure of trying to hold onto the slippery little sucker and if I could use it with a durable case, then I wouldn’t have to worry about my clumsy ass breaking it in the first month.

Turns out it was love at first use. It arrived in just a few days and I was surprised by how much sturdier it seemed than the freebie I tried. Not only is it the perfect way to represent my stripes, it’s a great way to reduce hand pain and fatigue. I love the design, too. Rosie the Riveter has always been near and dear to my feminist heart and I feel powerful when I look at her and think about all she represents in this EDS adaptation. Better yet, with its purple tones, it matches my galactic geek girl case to a T, so I didn’t have to sweat buying another case, provided it would adhere. Attaching it to my case was no problem, either.

Until Suddenly It Was…

After about a month of use, my Pop Socket popped right off my case. Of course the manufacturer set very specific instructions NOT to attach it to a case, so I take full responsibility. Of course I still didn’t want to live without it or my case. Since my case was only a few bucks, I decided to try to super glue it. I figured if I ruined the pop socket and/or the case, I wasn’t really much worse off and would just replace the case.

Getting My Pop Socket to Adhere to My Case

I applied a generous amount of super glue directly to the back of the pop socket and… So far so good! It adhered to both the pop socket and the case! After letting it sit a few minutes, I extended the button and went back to work. This time my beloved pop socket isn’t showing any signs of going anywhere, making it nearly as unbreakable as this EDS warrior! 😆

I love the added security of having the pop socket on my phone and my hands go numb and cramp way less. I have a more secure grip, which ultimately means less risk of dropping it. Since I decided to super glue it to my case, I also feel like the phone is still secure even if I do drop it.

If you want to reduce hand pain and have a convenient little way to stand your phone up, the pop socket is a great way to go. If you want to raise awareness for Ehlers-Danlos Syndrome, I highly recommend this one. You certainly don’t have to glue it to a case like I did mine, but if cases are as important to you as they are to me, it’s nice to know it’s an option and that regular old super glue, available for about a buck a tube, will get the job done. I do have to say, since it lasted a whole month being stuck to something it’s not supposed to be, that it does come with really good adhesive. Had I not gone rogue in the first place, I’m confident it would have stayed when applied directly to my phone for much longer. To order it on Amazon, go through this link: Ehlers Danlos Syndrome Warrior Unbreakable – EDS Awareness – PopSockets Grip and Stand for Phones and Tablets

And here are some Pop Sockets for raising awareness for other common comorbid conditions to Ehlers-Danlos Syndrome:

Already own a pop socket? Tell us what you thought about yours in the comments! If you’ve had issues with the adhesive wearing out, what fix did you try and how long did it hold?

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Pop sockets can really help alleviate the pain of gripping electronics and phones for people with EDS, ME/CFS, Fibromyalgia, MS, RA, Lupus, Arthritis and more. Why not raise some awareness while getting relief?
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Why Vacations Don’t Exist for People with MCAS: A Story

Kick back and grab a drink. It’s time to settle in for a little story about that time I decided to take a “vacation.” It’s laughable. Spoonies don’t get vacations. We may travel, but there’s no rest and relaxation to it. We’re sick no matter where we go and what we do and more likely than not, leaving your home, abandoning your diet and doing a lot more than normal in a foreign environment is the least relaxing thing a person with MCAS, among other chronic conditions, can do.

Our Plans

A map showing our route from Florence, KY to Marquette, MI.
Our route from Florence, KY to Marquette, MI.

I decided to test my mettle this summer by taking a 1,400 mile round trip drive to the Upper Peninsula to pick up my nephew, whom I hadn’t seen in 7 years because of the total separation I made from my family. My brother blocked access to his (at the time) 3 children when I put an end to his abuse. While it’s a complicated tale I’m not willing to get into and frankly I don’t want to draw any familial attention to myself, I will say it’s a control tactic very common to people with NPD.

Our plan was to leave on June 14, drive the 12 hours to Marquette to pick up Tom and take a few days to do some sightseeing on the way back. Once home, Tom would stay with us for 3 weeks before we would meet his mother on Independence weekend in Milwaukee.

Travel is hard for me now, in multiple ways. In recent years, because of my health, I have developed a lot of anxiety about travel and even if I didn’t, it’s still a source of stress. Add to that the fact that we moved six weeks before and I’d been doing a ton more than I should to wrap up our move and be prepared for vacation. I really should have known we were in for a disaster.

Off to a Bad Start

My brother got wind that I was picking up Tom the night before we were to leave, because I messed up and told the wrong person. Being the expert NDP manipulator, he said a bunch of stuff about me that upset Tom, who sent me a screenshot of his messages to get some answers from me. The message was a bit confusing to Tom, but crystal clear to me and I knew immediately my brother’s intention was not only to turn Tom against me, but it was also designed to trigger me the exact same way he did on the last day he will ever see me again. Even though I could recognize it for exactly what it was, it took hold of that tiny bit of travel anxiety I was dealing with and I was triggered anyway. I hardly slept that night.

The trip turned out to be brutal. I started into a huge, multisystemic MCAS reaction almost immediately, despite having taken all of my preventatives and increasing dosages wherever there was room. By the time we arrived in Marquette and I was expected to eat restaurant food with Tom and his mother, who I was very much looking forward to spending time with, I was a dizzy, dazed and confused mess.

A Stormy Afternoon on Lake Michigan

So Much for Sightseeing

Things only went downhill from there. The night we picked up Tom, he and I decided to take a dip in the pool. If I hadn’t already been reacting, who know what would have happened, but the chlorine turned me into one huge mass of hives with anxiety and I wasn’t having much luck getting things to quiet down. It turned out spring had just hit in the UP and it’s quite likely it wouldn’t matter what I did. The pollen would take me down even if I could have tolerated the unapproved foods, chlorine and air.

We ended up rushing toward home the next day and did and saw little, yet it was all still too much. We made it to Toledo and none of us could go anymore. We ended up in another hotel room. My hives were constant; I could hardly breathe at times, eating was pure torture and my histamine overload grew and grew. Add to that the familiar climbing pressure in my head, dizziness and the onset of migraines and dislocations and I was hard pressed to get any rest that night. By the time I got home, I was unable to stand upright without significant difficulty and my GI system was shutting down. I did my best to relax through the week so I could go to the Pride festival that weekend.

These instagram posts from this period fill in a little more detail, including my one and only actual sightseeing photo:

I ended up going to Pride in my wheelchair, which of course I hate. I didn’t really feel well enough to go, but I’d gotten the kid down here and he was really excited about it. Knowing I’d probably not get the chance to do much else with him, I forged ahead.

Of course it did me in completely and the next day, I ended up having a meltdown caused by anxiety, over-stimulation and pushing myself way too hard. I ended up scaring poor Tom, who I hadn’t even thought to warn that this could happen. I have a feeling I didn’t scare him half as bad with my temper tantrum as I would a few days later.

Then the Real Fun Started

The following Tuesday, we had just finished dinner when I got up to put my plate away and refill my glass. My husband asked me if he could get it for me, but I just shrugged him off. Even when having difficulty standing, I can only sit so long. By the time I made it the fridge in our tiny galley kitchen, I felt it coming on. Strong, like I had no chance of making it to a chair. I recognized the shaking, the heaviness of my limbs, the shooting pain at the top of my head and a wave of heat and dizziness that was quickly eating away at my vision. “Oh, fuck. I’m going down!” I called out. I tried to brace myself on the cabinets as I slid to the linoleum.

Usually lying flat is just what I need. The darkness begins to recede, the numbness drains from my limbs and the world goes back to standing still. I kept waiting for it to clear and realized it was getting worse, not better.

“Not better. I need a pillow,” I tried to say, pointing at my legs. It came out all wrong. I mumbled and stuttered until I managed to make myself clear. I needed to elevate my legs, but I’d hoped my husband would bring enough for my head. He Didn’t. My muscles grew stiff and the shaking grew more apparent as I fought against what I was feeling.

I began to seize, bucking against the linoleum covered concrete. As if controlled by voodoo, my head began jerking my chin from right to left and back again, twisting cruelly as my shoulders joined in. One leg rose and curled in on itself and kicked at the fridge. My shoulders bucked, slamming first one and then the other into the linoleum, head flying with it. My arms joined in, making internationally understood rude gestures at the cabinets and fridge on repeat.

I was aware of my husband and Loki at my feet. I was aware of Tom behind my head, watching with wide eyes and asking if he should dial 911. “No-o-ooo” rattled through my teeth as tears rolled down my checks. I felt vulnerable and exposed, half ashamed and half terrified by the voracity of the attack, but I knew it wasn’t anything close to what Tom was experiencing. I didn’t want him to see me like this. I didn’t want him to see anyone like this. I still wanted him to believe in the Easter bunny and unicorns, not fear for the possibility that someday he could possibly become me, though being my half-brother’s son, he carries only a fraction of my genes.

I finally realized as I was flailing around and beginning to wonder if it would ever end, that my concern for Tom and overall discomfort of seizing on the hard ground was causing me to attempt to control it. Attempting to control my muscles during a dystonic attack is like trying to contain a tornado. It’ll only make the destruction more violent.

It’s not always an easy thing to do; to relax into something terrible and strange for which you have no control. It’s something you learn how to do when you realize it’s the only thing that helps. Finally being reminded of this fact, I willed the tension from my body. Slowly, one by one my muscles began to listen and respond and sure enough the bucking became rocking until finally everything stilled.

A woman in dystonic Crisis Seizes on a gurney
A woman in dystonic Crisis Seizes on a gurney, from Cognitive and Psychopathological Aspects of Ehlers-Danlos Syndrome

I could feel every last buck and spasm. My head and/or shoulders had been thrown against the concrete repeatedly, my arms and legs had flailed into the fridge and cupboards. Every muscle was screaming out in pain. My spine and hips were on fire and when I attempted to role over so I could try to stand, I realized not everything that dislocated had been a simple subluxation (popping right back in on its own). I set to jerking them back in place as people and cats milled about uncomfortably.

The linoleum felt as unforgiving as the concrete beneath it and I couldn’t seem to muster the strength to stand. I dragged myself onto a pillow to protect my knees from the unforgiving floor. I still couldn’t get up. I began using the pillow to slide my way to the carpet and the living room beyond. I laughed weakly as I collapsed over the pillow. “I’m a dumb ass. Go get my wheelchair, please.” Feet disappeared and eventually arrived with the wheelchair that had been packed away in my closet.

When my husband got me tucked into bed, he told me both cats had been by my side the entire duration of my dystonic crisis; Loki at my feet with him and Rocket by my head with Tom. In retrospect, I’m glad I got to experience what is was like to have a health crisis surrounded by people I love, though I still regret bringing Tom to the freak show.

After I got settled, I called Tom in and explained what happened, assuring him it was not a fatal condition and hardly ever happened. I thought I had convinced him. Still, he chided me several times during the remainder of his trip, “Don’t die on me, now.”

A quote from "Why Vacations Don't Exist for People with MCAS," an essay about the consequences of attempting some summer travel with MCAS, EDS, POTS, Dystonia and a host of other comorbid conditions.

When we called the doctor for an appointment the next day, the scheduler told my husband to take me to the emergency room. He didn’t even need to relay the message. “I’m not going to the ER,” I said loudly, so she could hear.

The doctor called back 10 minutes later and I knew they had gotten him out of a consultation just so we could relay to him, once again why I wouldn’t go to the ER. It goes something like this: 1. We already know they aren’t epileptic, so the ER cannot do anything for me and 2. I don’t go to the ER unless I know for sure I’m dying. ERs have hurt me far worse than any other department. ERs may be solely responsible for my medical PTSD. 3. I DON’T DO ERs.

Once we got that clear, he booked me an appointment the following week.

That weekend, my husband took Tom home alone while I finished my “vacation” in bed. We’d only made it two full weeks. I don’t know how my husband did it. I know he was just as exhausted and worried for me as I was for him.

In light of everything that happened, it’s past time for me to understand that the days of vacations and long visits have passed me by. I try to remain hopeful that things will continue to improve with my MCAS, but this vacation proved how vulnerable I am still am outside of my own environment. It also showed me how ill-suited I am to dealing with change, the negative emotions that are inevitable when dealing with my family (even the good portions) and the demands and energy of young people. I simply can’t do these things anymore. It took me years to accept the limits of my existence, but now I am really quite happy to stay within the 1,000 sq. ft. safe zone we’ve created for me.

I’m more than okay with it, actually. I don’t have it in me to keep waging these wars on my body and I realize after what happened with my nephew that so long as I try to include extended family in my life, I am making myself susceptible to interaction with people I’m much better off leaving in the past. My future relationship with my nephew will have to remain much as it was before our vacation; on messenger.

During my weekend alone, I decided to shoot some videos about the differences between my normal baseline of health versus me in a flare, which involved into me talking about what I do to try to recover more quickly. My next post will share these posts and discuss some of the theories about what’s causing my dystonia. I hope you’ll join me for part two of this story, now published here: The Vacation Aftermath

Have your own vacation or summer outing turned nightmare to share? Tell us about it in the comments!

Resources and Further Reading:

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An essay about our vacation, the consequences that ensued and the valuable lesson learned that my traveling days are over, thanks to MCAS, EDS, POTS and other complicated diagnoses.