Connecting the Dots: My Continual Ache Defined


It’s been awhile, and although I do share tidbits extra ceaselessly on social media and through my publication, I wished to do a full write up of what has been happening. I haven’t revealed a weblog publish since April, so it is a lengthy overdue replace. It shares some thrilling skilled information, but additionally the private because it pertains to my well being.

This neighborhood has been an enormous a part of what has stored me afloat throughout the previous few, troublesome years. With my restricted bandwidth as a result of ongoing spinal cerebrospinal (CSF) leak, I’ve needed to reduce out a few of the work I need to do. The weblog was placed on hiatus first, as a result of updating on social media (primarily Instagram) is faster and fewer labour intensive.

However whereas I’ve not been placing out new posts right here, I’ve spent many hours updating the backend of the web site, and dealing on quite a lot of different issues that I wished to share. I’ve additionally seen specialists and realized extra about my physique, sufficient that that data sheds a really completely different gentle on the a few years of power ache I endured previous to my CSF leak.

It has taken time to course of the thread that now connects dots I by no means thought to attach, and I wished to maintain my neighborhood up to date.

This publish was revealed on October 7, 2021 and is up to date often.

Private Updates

Just a few updates about how I’m feeling, these related dots, and the place I’m dwelling.

Shifting to Gatineau, Quebec and Residing Semi-Independently

Since Could, I’ve been dwelling in Gatineau, throughout the river from Ottawa. My brother lives in Ottawa, and my plan is to ultimately transfer there as effectively. For now, although, Gatineau has been a stunning center floor. I received to spend a summer time wandering right down to the water, seeing my household, and studying tips on how to dwell principally alone, with a leak.

Gatineau Quebec
Unfiltered / unedited picture from a sundown over the Ottawa River, taken from the Gatineau facet.

My brother and his associate come over as soon as per week to assist with issues I can’t do, like getting groceries for me, and doing my laundry and my vacuuming. I’m fortunate that I’ve them to select up the slack that my leak steals away, and I’ll by no means complain about getting extra time with folks I really like a lot.

At first, adjusting to the condominium felt actually deflating. There have been many issues that I couldn’t attain, or use. The mattress was too low and really painful to get out and in of. The freezer was a drawer beneath the fridge, so I couldn’t open it with out making my CSF leak worse. The dishes and pots have been too heavy for me to clean myself, or use comfortably. The listing went on.

These are fixable issues, in fact. I received a mattress pad, a tiny freezer, and new light-weight dishes and a small pot to make use of, thanks in no small half to the Amazon present playing cards you bought me for my birthday.

However the preliminary weeks right here felt actually deflating. As people we’re so good at adjusting. Generally too good, and we neglect the place we actually are. The attitude I misplaced was that I’m really extra disabled than I remembered, one thing that hit me onerous after I moved into this condominium.

Like the rest, adjusting to this new life has its ups and downs, and ultimately I received previous the frustration and began strategizing methods to repair the issues I used to be going through. I additionally received a kitchen rolling cart, numerous canvas storage bins since every little thing has to sit down on counters to be reachable for me, and some different issues that make the place extra snug.

I used to be by no means positive if I’d even be capable of dwell independently once more. So whereas there’s a lot I want I may do, I’m very grateful that I’m able to have extra autonomy after years of being so depending on others for each little factor.

jodi ettenberg gatineau quebec
It’s 3.5 km to the Ottawa River and again, and I’m past grateful that I’m able to stroll there when my physique permits.

Spinal CSF Leak Standing

As I discussed, my spinal CSF leak remains to be energetic. However my physique both appears to have produced extra CSF, giving me some further “uptime”, or it has gotten barely higher. I did have a whopper of a setback earlier than my birthday in August, however finally I’ve come again to baseline once more. That baseline now could be higher than it was final yr at the moment. I get round 5-6 hours of standing time a day, with many breaks to lie down in between.

The online of that uptime is that I’m able to put some further work in, and I’ve thus divvied up my hours towards a few of the initiatives beneath. I’ve additionally been capable of deal with longer walks, which all the time helps elevate the spirits.

A share of that uptime goes towards the requirements of life, since I’m dwelling alone. Doing my very own dishes, getting ready my very own meals—all of it takes effort and time, and ache. But it surely’s been great, and peaceable, and like rediscovering myself once more.

My life does stay very small, and an “thrilling” day for me is after I go for a barely longer stroll than standard, or make some progress in different methods. Like final month, after I was capable of go and get take-out meals at a restaurant on my own, for the primary time in a few years. It’s not wherever close to the depth of the life I used to guide, but it surely stays greater than I believed I’d be capable of claw again.

The little issues are what I now have a good time. And I’m fortunate to have others right here to have a good time with me.

Offended Mast Cells

I just lately completed a really lengthy mast cell activation dysfunction web page. Nicely, for now it’s completed! I replace it when new research or analysis comes out.

mast cell activation syndrome symptoms and treatment
Mast cells!

A lot of you understand how powerful the final years have been when it comes to reactivity to meals, environments, and different unusual new triggers—like daylight. A few of these points began after I received sick in 2013, however I really had a few years as a baby the place I’d cough and itch whereas attempting to sleep. This went away after I hit puberty, and remained principally in repose till 2013. Then, when a lumbar puncture gave me a CSF leak, the sleeplessness, itchiness, tickling in my throat and extra got here again, along with many new points. This culminated in my going into anaphylaxis on the desk throughout my remaining spherical of blood patching.

Ever since, I’ve been struggling to stabilize and calm my immune system. I began studying about mast cells as a result of different CSF leakers with complicated circumstances additionally appeared to have this subject. It was a fellow leaker who recommended I look into it initially.

From the web page I wrote:

Mast cells are “sentinels” of the immune system, a sort of white blood cell that helps management the immune processes within the physique. They’re known as resident immune cells as a result of they reside in tissues and never in our bloodstream. And so they reside in tissues all around the physique, from the connective tissue, to the endothelial cells, to the epithelial cells, and even within the mind.

Over time, I stored an enormous folder of notes, research, and protocols and whittled down my very own self-experimentation to one thing that has labored. I used to be capable of self-refer to a specialist outdoors of Canada (fortunately my international journey insurance coverage lined the lab work wanted to check for it, however not the specialist appointments themselves), and journey to the US to do the required testing.

Testing confirmed that I do, in reality, have this dysfunction. It’s a doozy, and it impacts each side of my day-to-day life, along with the leak. I went from consuming tons of avenue meals and touring the world, to going into anaphylaxis with sure smells, meals, or insect stings.

Given how many individuals have written me through the years with unusual reactions, hives, thick sticky blood, bone ache, rashes, itching, complications, and way more, I wished to share the assets web page as a result of it goes into signs brought on by every of the techniques affected by mast cells when they’re dysfunctional.

As well as, the prevalence of long-covid throughout the pandemic is related. Anecdotally, a lot of you wrote in to say that you just’ve been recognized with a mast cell dysfunction following a COVID-19 an infection. This matches a few of the literature, however analysis is ongoing on this space. At the least one mast cell specialist agrees. It’s additionally much like what occurred after I received sick in 2013.

Given these numbers, I wished to ensure I had a useful resource web page for these of you with lengthy covid, too. It has felt so bewildering to handle and sort out this very erratic situation and I understand how exhausting it may be to take a look at the scads of very contradictory data on-line and attempt to make sense of it.

Whereas I’m clearly not a medical physician, nor do I play one on TV, I hope my analysis notes will assist sufferers navigate this difficult illness. It’s additionally price noting that power mast cell dysfunction can weaken connective tissue and in addition delay wound therapeutic.

Wonky Connective Tissue

One other thriller solved. It seems that I additionally have a genetic situation that impacts my connective tissue. It’s known as Ehlers-Danlos Syndrome (EDS), of which there are completely different subtypes. In response to the geneticist I noticed, I’ve the hypermobile sort (known as hEDS), the subtype the place the gene has not but been discovered. Analysis is thus made based mostly on scientific findings.

Method again after I began writing about this spinal faucet and what occurred thereafter, I mentioned that the sufferers that had connective tissue issues have been those who appeared to have the worst outcomes.

Sadly I’m in that boat.

The geneticist confirmed that disparate points I by no means would have thought to attach all lead again to my collagen synthesis. And that the worsening expression of this situation additionally explains the years of power ache since I received sick in 2013. (Apparently it’s additionally why I look so younger, although the remainder of my physique feels prefer it’s 90 years previous.)

My appointment with the geneticist was an awesome one. For starters, she was bowled over by the power of what I put my physique by means of throughout my a few years of journey. She instructed me she was shocked it took so lengthy for every little thing to actually collapse. She confirmed that in a few of her sufferers, getting a foul virus can worsen the underlying collagen points, which dovetails with the adjustments in my physique and pores and skin after I received sick in 2013.

However even earlier than then, there have been so many unusual quirks that ran in components of my household however didn’t appear to have an effect on my mates. These included how my ligaments simply tore, how I had delayed wound therapeutic, how my pores and skin was mushy and velvety and skinny, how versatile I used to be, the truth that native anesthetics don’t work for me—and extra.

This final issue was additionally why my spinal faucet was so excruciatingly painful.

Previous to the lumbar puncture, any considerations I raised to medical doctors about my rising ache ranges or easily-obtained accidents have been merely dismissed as “stress.” This minimization or ignoring of signs isn’t new, however is widespread. Says geneticist Dr. Clair Francomano,

“Lots of people hear that it’s all of their head, and that there isn’t any physiologic foundation for his or her signs,” Francomano mentioned. “Significantly in the event that they’re healthy-looking younger ladies, sadly there’s a tendency to dismiss their expertise.”

By way of STAT Journal, “On a regular basis bumps injured her joints, however discovering the rationale took half a century

For me, the analysis was validating. The stretchy pores and skin and painful joints and a lot extra made sense. As does celiac illness and the mast cell points. A 2021 case management report discovered that celiac illness was one of many commonest gastrointestinal circumstances related to EDS, and the affiliation was a lot stronger than in controls. And a unique 2021 evaluation discovered that in hospitalized sufferers with MCAS, 1 in 3 had a comorbid analysis of hEDS.

But it surely was additionally deflating. Connective tissue dysfunction sufferers appear to be those the place the leak repairs don’t maintain. In my years within the CSF leak teams, these of us with wonky tissues are those who blow out new leaks and/or have their previous ones re-open ceaselessly, even with surgical procedure. This data is a part of why I’ve been so conservative about pursuing additional procedures.

The analysis additionally hit me onerous for one more motive: all through my life, I joked that I used to be scrappy “although my physique hated me”. I’d say issues like, “oh I used to be constructed from the faulty components of different folks!” My ex used to say I used to be constructed with no warranties (sure, as attorneys we thought this was humorous). However the fact was the other. Not figuring out I used to be a canary in a coal mine, I put my physique by means of a lot. I pushed myself to the brink many instances. I stubbornly stored touring even after I received ceaselessly sick. Even after I handled years of power ache. 

And all through I used to be mad.

Mad at my physique, mad at my exhaustion, mad that I couldn’t be “regular” like everybody else. 

Why did I all the time get harm? Or sick? Or exhausted?

Now I’ve my reply. All these years after I was mad at my physique, I ought to have been pleased with it. Regardless of these underlying issues I didn’t know, it allowed me to see the world intensely for a decade. 

Now I do know. 

Enterprise Updates

Among the initiatives I’ve been engaged on within the months since I final revealed.

Sharing Sources about Ache on Patreon

I created the Patreon as a approach to settle for help from this neighborhood, however it’s slowly morphing into a spot the place I additionally share assets for people who find themselves struggling for power ache, or those that know somebody who’s in ache.

The unhappy actuality is that almost all of us are in a type of two classes.

Through the years, I’ve obtained many questions on how I’ve coped with my very own ache ranges. Now, I’m getting questions on how somebody can help an individual in ache. So the Patreon’s AMAs are a spot the place I reply these questions, and add further assets.

The posts I’ve shared there additionally go into how I made the condominium I’m in accessible, and what adjustments to the setup allowed me to deal with dwelling alone with the disabilities I now have. Most just lately, as typically folks really feel dangerous about asking for assist or accepting assist, somebody requested me to speak about tips on how to discuss to somebody in ache to assist them get help if they’re cussed. (I’ll be answering this within the subsequent AMA).

From suggestions up to now, these have been actually helpful. I look ahead to sharing extra.

Additionally, I’m now a Patreon ambassador! I received an e mail from them in the summertime, asking if I’d be concerned about making use of for an ambassadorship programme they have been constructing. I’m one in every of a small group of creators (out of their 200,000 customers) who have been accepted.

It’s nonetheless fairly new, and to this point it’s been pretty to satisfy some actually fascinating, tremendous creative folks. The ambassadorship is unpaid, however options workshop—I’ve attended just a few up to now—and rewarding breakout rooms with others within the programme to share methods and issues/successes. Different perks embrace 1:1 product help, social media options, enjoyable swag for my Patreon neighborhood, in addition to paid alternatives to take part in issues like product focus teams or inventive collaborations with their workforce.

I don’t understand how they discovered me, and it’s intimidating as a result of most of the different creators have upwards of 2000 Patrons, however I’m trying ahead to taking part! On condition that it was all of you who requested me to start out a Patreon, I’ve this neighborhood to thank!

When you’re concerned about becoming a member of the Patreon neighborhood, you are able to do so right here.

A One-Time Assist Possibility

After I launched my Patreon, I obtained messages from readers who wished to contribute and/or help me in my work through a one-time fee. I didn’t have that in place, however do now.

The Curious About Every little thing Publication

Regardless of all this pleasure of transferring to a brand new place, I’ve managed to maintain my publication working. I’ve been enjoying round with format (and emojis, I can’t assist myself), and primarily spotlighting just a few necessary reads every month, together with extra enjoyable photo-essays and quirky items I discover. I typically embrace private updates, however the focus of the publication is on proficient and/or necessary writing price studying.

Whereas it’s on Substack, and plenty of writers have moved to a paid publication mannequin, I don’t plan to take action. The Patreon is the first help system for my revenue, alongside celiac playing cards and the meals maps store. The publication I plan to maintain free.

Even when this website has been extra dormant than I would love, I really feel completely satisfied that CAE has gone out each month for the final 11 months.

You’ll be able to join beneath in case you are concerned about receiving it.

A Huge Piece about Psychological Mindset (Coming Quickly)

I had a publish known as The way to Get Via Horrible Occasions that I had on this website, however I’ve quickly taken it down as I deliberate to publish it individually. But it surely, and Instagram posts about resilience and reframing, caught the eye of an editor at an enormous outlet, who commissioned a bit about how I discovered pleasure once more regardless of my restricted life.

I’ve been engaged on this piece over the last whereas and it’s nonetheless in enhancing, however I’m excited to share it right here together with the republication of the Horrible Occasions piece.

Redesign of Authorized Nomads:

You might have observed that the positioning is somewhat completely different!

Arthur the raven, my mascot, may be very distinguished. Ravens are such extremely curious birds, and I selected one as my website’s throughline with the intention to spotlight that I nonetheless am too, albeit differently to earlier than.

arthur the raven legal nomads

And, a brand new slogan: interested in every little thing. I’m now not telling tales by means of meals, in order that slogan needed to go. The brand new emblem displays a divergence from my prior lifetime of journey and meals, but additionally the reality of who I all the time was: somebody who wished to be taught as a lot as attainable.

I began to really feel actually dissonant after I regarded on the ‘previous’ Authorized Nomads, so this displays extra of the place I’m in life whereas nonetheless sustaining the same construction.

I’ve added well being and power ache to the primary classes on the house web page, too, since they’re now a much bigger a part of what I write about.

I had actually particular concepts of what I wished, in order with the final redesign to the positioning I offered the belongings (new logos, Arthur the Raven, and so forth.) to an internet developer as an alternative of hiring somebody who did branding in addition to improvement. The belongings have been inked by my artist-in-Authorized-Nomadsness Ella F. Sanders. The redesign was performed by an internet developer who works for fellow journey blogger Mike’s net improvement firm. Whereas her work was paid, he donated his personal time professional bono to assist supervise the undertaking.

Submit Overhauls and Web page Updates:

My morning routine is to stand up, make espresso, after which do some work on the web site till I have to take a break.

This has allowed me to slowly replace pages and posts over time, and maintain Authorized Nomads extra present.

Amongst them:

  • The gluten free guides are up to date for 2021. They’re right here.
  • The gluten free New York Metropolis information has additionally been up to date to replicate restaurant closures and a few newcomers to the scene which might be 100% gluten free.
  • I added a historical past of Belize part, and a “the place is Belize positioned” part, as a result of imagine it or not that’s the commonest search time period for this publish. It’s additionally received COVID-19 guidelines for visiting, in case you have been selecting to danger going now.
  • I up to date the Vietnamese Egg Espresso Recipe with locations to get it in North America, and new items and movies concerning the candy deal with.
  • I up to date my piece on sleep points and jet lag with details about tips on how to sleep higher, and new research about chronomedicine and Covid-19.
  • I up to date my Vipassana Meditation retreat expertise with some new information concerning the risks of these sorts of retreats, and the way in some circumstances they will result in a psychological break.
  • The Various Careers for Legal professionals web page has been up to date to incorporate pandemic data, the rise of consultants within the authorized area, and a extra clear breakdown of tips on how to go about shifting careers whenever you really feel overwhelmed excited about how to take action.
  • In November 2021, I up to date my historical past of chili peppers publish to incorporate the 2021 Nobel Prize successful analysis on capsaicin, somatosensory receptors, and ache.

RSS-to-Electronic mail Adjustments: Feedburner isn’t any extra. RIP Feedburner.

Google has been threatening to chop RSS-to-email choices for Feedburner for a few years. The service was deprecated years in the past, and this July they lastly mentioned that they have been performed supporting that choice. So I had to determine what service to make use of with the intention to get these folks their emails. (Since I barely write right here, I had numerous time to do that!)

For these of you who opted to obtain Authorized Nomads updates through e mail, new posts can be despatched by an organization known as ConvertKit. I used to be planning on switching to them proper earlier than my CSF leak occurred, so it solely took me an additional few years. My pal Nathan began the corporate and is a extremely pretty human being; I’d a lot somewhat give my cash to proficient mates than strangers!

When you’re not getting Authorized Nomads through e mail, you may join through the shape beneath. That is only for LN posts (about each six months, when it comes to publishing schedule lately!). My month-to-month publication above is separate.

When you have been already subscribed to get Authorized Nomads posts by e mail, you do not want to do something. I wished to elucidate why the emails look completely different, and let everybody know they will additionally join that approach if they like.


That’s it for now!

Whereas the ache I’m in by no means goes away, these initiatives and my newfound autonomy have helped make these previous few months a few of the greatest in years. I is probably not cell or touring the world anymore, however I imagine that I’m capable of assist extra folks than ever earlier than.

Whether or not it’s serving to navigate powerful instances, understanding ache and loss, or simply giving extra context to the sicknesses of family members, this work feels helpful.

And feeling helpful goes a great distance towards life satisfaction for me.

Thanks for permitting me to share this journey with you.

Till subsequent time,
Jodi

Edited so as to add: I obtained just a few messages saying I’m fortunate to dwell in Canada as a result of I may simply see specialists. Sure, I really like Canada, however that’s not what occurred. Canada’s system is nice when you might have a typical, costly illness. You’ll not go bankrupt resulting from medical care when getting therapy for most cancers, for instance. However entry to specialist care, particularly for uncommon illnesses, may be very troublesome. I’ve additionally been in Quebec for a very long time and nonetheless should not have a main care doctor, as a result of the waits are so lengthy. I can thus not get a referral to a specialist.

So as to see these specialists, together with throughout my time at Duke, I needed to battle onerous to get care. I feel a few of the expertise you be taught touring long run apply right here, too; when a path to getting from A to B is now not attainable, you begin to search for different, inventive connections between them.

For me, this meant self-referring to the mast cell specialist and to the geneticist, but it surely took a very long time to make it occur. Concurrently, I stored attempting to go through the standard route right here in Canada. I’m privileged that my international medical plan I used on my travels lined a few of these appointments.

The medical techniques in each international locations have their issues, and their advantages. I discovered it troublesome to navigate as I sought out these solutions, but it surely took my determining that these circumstances matched what was happening, then attending to specialists to see if these theories have been right. I in any other case wouldn’t have gotten care.



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