Connecting the Dots: My Chronic Pain Explained. (And a Long Overdue Update)

It’s been awhile, and though I do share tidbits more frequently on social media and via my newsletter, I wanted to do a full write up of what has been going on. I haven’t published a blog post since April, so this is a long overdue update. It shares some exciting professional news, but also the personal as it relates to my health.

This community has been a huge part of what has kept me afloat during the last few, difficult years. With my limited bandwidth due to the ongoing spinal cerebrospinal (CSF) leak, I have had to cut out some of work I want to do. The blog was put on hiatus first, because updating on social media (primarily Instagram) is quicker and less labour intensive.

But while I have not been putting out new posts here, I have spent many hours updating the backend of the website, and working on a number of other things that I wanted to share. I’ve also seen specialists and learned more about my body, enough that that information sheds a very different light on the many years of chronic pain I endured prior to my CSF leak.

It has taken time to process the thread that now connects dots I never thought to connect, and I wanted to keep my community updated.

Personal Updates

A few updates about how I’m feeling, those connected dots, and where I’m living.

Moving to Gatineau, Quebec and Living Semi-Independently

Since May, I’ve been living in Gatineau, across the river from Ottawa. My brother lives in Ottawa, and my plan is to eventually move there as well. For now, though, Gatineau has been a lovely middle ground. I got to spend a summer wandering down to the water, seeing my family, and learning how to live mostly alone, with a leak.

Gatineau Quebec
Unfiltered / unedited photo from a sunset over the Ottawa River, taken from the Gatineau side.

My brother and his partner come over once a week to help with things I cannot do, like getting groceries for me, and doing my laundry and my vacuuming. I’m lucky that I have them to pick up the slack that my leak steals away, and I will never complain about getting more time with people I love so much.

At first, adjusting to the apartment felt really deflating. There were many things that I couldn’t reach, or use. The bed was too low and very painful to get in and out of. The freezer was a drawer under the fridge, so I couldn’t open it without making my CSF leak worse. The dishes and pots were too heavy for me to wash myself, or use comfortably. The list went on.

These are fixable problems, of course. I got a mattress pad, a tiny freezer, and new lightweight dishes and a small pot to use, thanks in no small part to the Amazon gift cards you got me for my birthday.

But the initial weeks here felt really deflating. As humans we are so good at adjusting. Sometimes too good, and we forget where we really are. The perspective I lost was that I am actually more disabled than I remembered, something that hit me hard when I moved into this apartment.

Like anything else, adjusting to this new life has its ups and downs, and eventually I got past the frustration and started strategizing ways to fix the problems I was facing. I also got a kitchen rolling cart, lots of canvas storage bins since everything has to sit on counters to be reachable for me, and a few other things that make the place more comfortable.

I was never sure if I’d even be able to live independently again. So while there is a lot I wish I could do, I am very grateful that I am able to have more autonomy after years of being so dependent on others for every little thing.

jodi ettenberg gatineau quebec
It’s 3.5 km to the Ottawa River and back, and I am beyond grateful that I am able to walk there when my body allows.

Spinal CSF Leak Status

As I mentioned, my spinal CSF leak is still active. But my body either seems to have produced more CSF, giving me some additional “uptime”, or it has gotten slightly better. I did have a whopper of a setback before my birthday in August, but ultimately I have come back to baseline again. That baseline now is better than it was last year at this time. I am getting around 5-6 hours of standing time a day, with many breaks to lie down in between.

The net of that uptime is that I am able to put some extra work in, and I have thus divvied up my hours toward some of the projects below. I’ve also been able to handle longer walks, which always helps lift the spirits.

A percentage of that uptime goes toward the necessities of life, since I’m living alone. Doing my own dishes, preparing my own food—it all takes time and effort, and pain. But it’s been wonderful, and peaceful, and like rediscovering myself again.

My life does remain very small, and an “exciting” day for me is when I go for a slightly longer walk than usual, or make some progress in other ways. Like last month, when I was able to go and get take-out food at a restaurant by myself, for the first time in many years. It’s not anywhere near the intensity of the life I used to lead, but it remains more than I thought I’d be able to claw back.

The little things are what I now celebrate. And I am lucky to have others here to celebrate with me.

Angry Mast Cells

I recently finished a very long mast cell activation disorder page. Well, for now it’s finished! I update it when new studies or research comes out.

mast cell activation syndrome symptoms and treatment
Mast cells!

Many of you know how tough the last years have been in terms of reactivity to food, environments, and other strange new triggers—like sunlight. Some of these issues started after I got sick in 2013, but I actually had many years as a child where I would cough and itch while trying to sleep. This went away when I hit puberty, and remained mostly in repose until 2013. Then, when a lumbar puncture gave me a CSF leak, the sleeplessness, itchiness, tickling in my throat and more came back, in addition to many new issues. This culminated in my going into anaphylaxis on the table during my final round of blood patching.

Ever since, I’ve been struggling to stabilize and calm my immune system. I started learning about mast cells because other CSF leakers with complex cases also seemed to have this issue. It was a fellow leaker who suggested I look into it initially.

From the page I wrote:

Mast cells are “sentinels” of the immune system, a type of white blood cell that helps control the immune processes in the body. They are called resident immune cells because they reside in tissues and not in our bloodstream. And they reside in tissues all over the body, from the connective tissue, to the endothelial cells, to the epithelial cells, and even in the brain.

Over time, I kept a huge folder of notes, studies, and protocols and whittled down my own self-experimentation to something that has worked. I was able to self-refer to a specialist outside of Canada (thankfully my global travel insurance covered the lab work needed to test for it, but not the specialist appointments themselves), and travel to the United States to do the required testing.

Testing confirmed that I do, in fact, have this disorder. It’s a doozy, and it affects every aspect of my day-to-day life, in addition to the leak. I went from eating tons of street food and traveling the world, to going into anaphylaxis with certain smells, foods, or insect stings.

Given how many people have written me over the years with strange reactions, hives, thick sticky blood, bone pain, rashes, itching, headaches, and much more, I wanted to share the resources page because it goes into symptoms caused by each of the systems affected by mast cells when they are dysfunctional.

In addition, the prevalence of long-covid during the pandemic is relevant. Anecdotally, many of you wrote in to say that you’ve been diagnosed with a mast cell disorder following a COVID-19 infection. This matches some of the literature, but research is ongoing in this area. At least one mast cell specialist agrees. It’s also similar to what happened after I got sick in 2013.

Given those numbers, I wanted to make sure I had a resource page for those of you with long covid, too. It has felt so bewildering to manage and tackle this very erratic condition and I know how exhausting it can be to look at the scads of very contradictory information online and try to make sense of it.

While I am obviously not a medical doctor, nor do I play one on TV, I hope my research notes will help patients navigate this complicated disease.

Wonky Connective Tissue

Another mystery solved. It turns out that I also have a genetic condition that affects my connective tissue. It’s called Ehlers-Danlos Syndrome (EDS), of which there are different subtypes. According to the geneticist I saw, I have the hypermobile type (called hEDS), the subtype where the gene has not yet been found. Diagnosis is thus made based on clinical findings.

Way back when I started writing about this spinal tap and what happened thereafter, I said that the patients that had connective tissue problems were the ones who seemed to have the worst outcomes.

Sadly I am in that boat.

The geneticist confirmed that disparate issues I never would have thought to connect all lead back to my collagen synthesis. And that the worsening expression of this condition also explains the years of chronic pain since I got sick in 2013. (Apparently it’s also why I look so young, though the rest of my body feels like it’s 90 years old.)

My appointment with the geneticist was an overwhelming one. For starters, she was taken aback by the force of what I put my body through during my many years of travel. She told me she was surprised it took so long for everything to really collapse. She confirmed that in some of her patients, getting a bad virus can worsen the underlying collagen issues, which dovetails with the changes in my body and skin after I got sick in 2013.

But even before then, there were so many strange quirks that ran in parts of my family but did not seem to affect my friends. Those included how my ligaments easily tore, how I had delayed wound healing, how my skin was soft and velvety and thin, how flexible I was, the fact that local anesthetics don’t work for me—and more.

This last factor was also why my spinal tap was so excruciatingly painful.

Prior to the lumbar puncture, any concerns I raised to doctors about my rising pain levels or easily-obtained injuries were simply dismissed as “stress.” This minimization or ignoring of symptoms isn’t new, but is common. Says geneticist Dr. Clair Francomano,

“A lot of people hear that it’s all in their head, and that there is no physiologic basis for their symptoms,” Francomano said. “Particularly if they’re healthy-looking young women, unfortunately there is a tendency to dismiss their experience.”

Via STAT Magazine, “Everyday bumps injured her joints, but finding the reason took half a century

For me, the diagnosis was validating. The stretchy skin and painful joints and so much more made sense. As does celiac disease and the mast cell issues. A 2021 case control report found that celiac disease was one of the most common gastrointestinal conditions associated with EDS, and the association was much stronger than in controls. And a different 2021 analysis found that in hospitalized patients with MCAS, 1 in 3 had a comorbid diagnosis of hEDS.

But it was also deflating. Connective tissue disorder patients seem to be the ones where the leak repairs don’t hold. In my years in the CSF leak groups, those of us with wonky tissues are the ones who blow out new leaks and/or have their old ones re-open frequently, even with surgery. This information is part of why I’ve been so conservative about pursuing further procedures.

The diagnosis also hit me hard for another reason: throughout my life, I joked that I was scrappy “even though my body hated me”. I’d say things like, “oh I was built from the defective parts of other people!” My ex used to say I was built with no warranties (yes, as lawyers we thought this was funny). But the truth was the opposite. Not knowing I was a canary in a coal mine, I put my body through so much. I pushed myself to the brink many times. I stubbornly kept traveling even when I got frequently sick. Even when I dealt with years of chronic pain. 

And throughout I was mad.

Mad at my body, mad at my exhaustion, mad that I couldn’t be “normal” like everyone else. 

Why did I always get hurt? Or sick? Or exhausted?

Now I have my answer. All those years when I was mad at my body, I should have been proud of it. Despite these underlying things I didn’t know, it allowed me to see the world intensely for a decade. 

Now I know. 

Business Updates

Some of the projects I’ve been working on in the months since I last published.

Sharing Resources about Pain on Patreon

I created the Patreon as a way to accept support from this community, but it is slowly morphing into a place where I also share resources for people who are suffering for chronic pain, or those who know someone who is in pain.

The sad reality is that most of us are in one of those two categories.

Over the years, I’ve received many questions about how I’ve coped with my own pain levels. Now, I’m getting questions about how someone can support a person in pain. So the Patreon’s AMAs are a place where I answer those questions, and add additional resources.

The posts I’ve shared there also go into how I made the apartment I’m in accessible, and what changes to the setup allowed me to handle living alone with the disabilities I now have. Most recently, as sometimes people feel bad about asking for help or accepting help, someone asked me to talk about how to talk to someone in pain to help them get support if they are stubborn. (I’ll be answering this in the next AMA).

From feedback so far, these have been really useful. I look forward to sharing more.

Also, I’m now a Patreon ambassador! I got an email from them in the summer, asking if I’d be interested in applying for an ambassadorship programme they were building. I’m one of a small group of creators (out of their 200,000 users) who were accepted.

It’s still quite new, and thus far it’s been lovely to meet some really interesting, super artistic people. The ambassadorship is unpaid, but features workshop—I’ve attended a few so far—and rewarding breakout rooms with others in the programme to share strategies and problems/successes. Other perks include 1:1 product support, social media features, fun swag for my Patreon community, as well as paid opportunities to participate in things like product focus groups or creative collaborations with their team.

I don’t know how they found me, and it’s intimidating because many of the other creators have upwards of 2000 Patrons, but I’m looking forward to participating! Given that it was all of you who asked me to start a Patreon, I have this community to thank!

If you’re interested in joining the Patreon community, you can do so here.

The Curious About Everything Newsletter

Despite all this excitement of moving to a new place, I’ve managed to keep my newsletter running. I’ve been playing around with format (and emojis, I can’t help myself), and primarily spotlighting a few important reads each month, along with more fun photo-essays and quirky pieces I find. I sometimes include personal updates, but the focus of the newsletter is on talented and/or important writing worth reading.

While it is on Substack, and many writers have moved to a paid newsletter model, I do not plan to do so. The Patreon is the primary support system for my income, alongside celiac cards and the food maps shop. The newsletter I plan to keep free.

Even if this site has been more dormant than I would like, I feel happy that CAE has gone out every month for the last 11 months.

You can sign up below if you are interested in receiving it.

A Big Piece about Mental Mindset (Coming Soon)

I had a post called How to Get Through Terrible Times that I had on this site, but I have temporarily taken it down as I planned to publish it separately. But it, and Instagram posts about resilience and reframing, caught the attention of an editor at a big outlet, who commissioned a piece about how I found joy again despite my limited life.

I’ve been working on this piece during the last while and it’s still in editing, but I am excited to share it here along with the republication of the Terrible Times piece.

Redesign of Legal Nomads:

You may have noticed that the site is a little different!

Arthur the raven, my mascot, is very prominent. Ravens are such incredibly curious birds, and I chose one as my site’s throughline in order to highlight that I still am too, albeit in a different way to before.

arthur the raven legal nomads

And, a new slogan: curious about everything. I am no longer telling stories through food, so that slogan had to go. The new logo reflects a divergence from my prior life of travel and food, but also the truth of who I always was: someone who wanted to learn as much as possible.

I started to feel really dissonant when I looked at the ‘old’ Legal Nomads, so this reflects more of where I am in life while still maintaining a similar structure.

I’ve added health and chronic pain to the main categories on the home page, too, since they are now a bigger part of what I write about.

I had really specific ideas of what I wanted, so as with the last redesign to the site I provided the assets (new logos, Arthur the Raven, etc.) to a web developer instead of hiring someone who did branding as well as development. The assets were inked by my artist-in-Legal-Nomadsness Ella F. Sanders. The redesign was done by a web developer who works for fellow travel blogger Mike’s web development company. While her work was paid, he donated his own time pro bono to help supervise the project.

Post Overhauls and Page Updates:

My morning routine is to get up, make coffee, and then do some work on the website until I need to take a break.

This has allowed me to slowly update pages and posts over time, and keep Legal Nomads more current.

Among them:

  • The gluten free guides are updated for 2021. They’re here.
  • The gluten free New York City guide has also been updated to reflect restaurant closures and some newcomers to the scene that are 100% gluten free.
  • I added a history of Belize section, and a “where is Belize located” section, because believe it or not that’s the most common search term for this post. It’s also got COVID-19 rules for visiting, if you were choosing to risk going now.
  • I updated the Vietnamese Egg Coffee Recipe with places to get it in North America, and new pieces and videos about the sweet treat.
  • I updated my piece on sleep issues and jet lag with information about how to sleep better, and new studies about chronomedicine and Covid-19.
  • I updated my Vipassana Meditation retreat experience with some new data about the dangers of those kinds of retreats, and how in some cases they can lead to a mental break.
  • The Alternative Careers for Lawyers page has been updated to include pandemic information, the rise of consultants in the legal field, and a more clear breakdown of how to go about shifting careers when you feel overwhelmed thinking about how to do so.
  • I will update my history of chili peppers post soon to include the 2021 Nobel Prize winning research on capsaicin and pain.

RSS-to-Email Changes: Feedburner is no more. RIP Feedburner.

Google has been threatening to cut RSS-to-email options for Feedburner for many years. The service was deprecated years ago, and this July they finally said that they were done supporting that option. So I had to figure out what service to use in order to get those people their emails. (Since I barely write here, I had lots of time to do this!)

For those of you who opted to receive Legal Nomads updates via email, you’ll see that this post looks different in your inbox. It’s being sent by a newer company called Follow.it. I moved over the Feedburner list to this new company after researching options for a replacement.

For those who are interested in signing up to get these posts via email, you can do so here, or via the sign up form below.

Given how infrequently I post here, the best option to receive a similar service as prior is to select “email updates” as I’ve highlighted in the image below:

If you were already subscribed to get Legal Nomads posts by email, you do not need to do anything. I wanted to explain why the emails look different, and let everyone know they can also sign up that way if they prefer.


That’s it for now!

While the pain I’m in never goes away, these projects and my newfound autonomy have helped make these last few months some of the best in years. I may not be mobile or traveling the world anymore, but I believe that I’m able to help more people than ever before.

Whether it’s helping navigate tough times, understanding pain and loss, or just giving more context to the illnesses of loved ones, this work feels useful.

And feeling useful goes a long way toward life satisfaction for me.

Thank you for allowing me to share this journey with you.

Until next time,
Jodi

The post Connecting the Dots: My Chronic Pain Explained. (And a Long Overdue Update) appeared first on Legal Nomads.

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