Patient Endurance

This building is part of VGH, you wouldn't know how pretty it is from the outside. Sitting there, it was hard not to notice I was the youngest person for miles around who didn't actually work there. I was there to get a second opinion on my laryngeal granuloma.

I gave my history twice with my easily worn out voice (to the resident, then the doctor), had my throat and neck palpated three times extremely roughly (by the resident, then the doctor, then the resident again), and went through getting gagged twice (by the resident and then the doctor) by an apparently better but much more uncomfortable throat camera than the kind they usually shove through your sinus. (This one was just a big non-flexible metal stick they stick into the back of your throat.) It hurt and even after having my mouth and throat numbed with an awful spray that burned very badly then made me feel like I couldn't swallow (which was scary and I hadn't been warned about) I could still barely do what I was supposed to to let him get a proper view down my throat - ie. not choke/gag and make sounds while having said contraption jammed into the back of my throat as far as it would go.

Waiting for an appointment at VGH

When I started crying and having an anxiety attack, the doctor finally gave up and decided he'd gotten a quick glimpse, enough to play back on the camera. In the split second of visibility, he couldn't see a granuloma anymore. He then told me that I had "Irritable Larynx Syndrome" (meaning the symptoms I was now having were no longer from just reflux or irritation, but also a muscle/nerve hypersensitivity) and that it was just part of an overall umbrella condition called "Central Sensitivity Syndrome". I learned later this doctor has been doing research correlating laryngeal issues with other chronic conditions like IBS, Fibromyalgia, Chronic Fatigue Syndrome, etc. and I guess he decided I fit the profile, and labeled me with two new disorders. The only solution he offered was a commonly (over)-prescribed medication which poses fairly significant risk of side effects to someone with the issues I already have. It could easily do just as much harm as good, and I've been told it's the only option by both specialists I've seen. (Then again, specialists really have a poor track record with me...)

He told me to go look up his articles online, so I did this when I got home, and after the trauma of the appointment itself (which I got zero sympathy/empathy for), I lost it. I cried. I spent the rest of the day in bed. I was exhausted mentally and physically. I was absolutely fed up, and the idea of just having more wrong with me was too much.

I emailed a few people on my "health team" to let them know about the second opinion results - my doctor, my counsellor, and my massage therapist - and set up appointments with each. They (and a wise friend) proceeded to talk me down, reminding me these were just labels and that they didn't really change what was going on or what the recommended treatment was. That we are already working on things to help, and that we're going in the right direction. My massage therapist has even used this info to further tailor the types of treatment she's doing with me, because she's an awesomepants.

After more research and serious deliberation, I made the decision to keep postponing taking the medication prescribed by the specialist. I know, I know, I feel like I'm one of those rogue patients... But the thing is my "gut" is screaming at me not to take them. I've sustained a huge amount of damage by being mis-diagnosed and given the wrong treatments before, that's actually a huge part of what got me into this situation with my throat, fatigue, chronic pain, etc.

My doctor and I are working with an integrative approach to repairing my digestive system, decreasing inflammation, and addressing other more overarching issues, and my hope is that this will help things improve slowly and more naturally. The specialist said this wouldn't work. But the thing is after 2.5 months since finding my doctor (so probably about 2 months of actual treatment), my throat can handle talking more now than I've been able to in several months - it's still not great, but small improvement is happening. I hold the hope that it'll continue.

Pink Ranunculus - so pretty!

It's still exhausting, but I feel like this is the right way to work on repairing the damage and inflammation going on in my body. I don't expect it to improve overnight. Though I often feel overwhelmed with all the medications and supplements I have to take, and am annoyed by the seemingly constant buzzing of my phone reminding me to take whatever's next, I am trying really hard to be patient.

I'm meditating, I'm managing my diet, I'm resting, I'm communicating, I'm asking for help a little bit more (it's a work in progress!), and I'm doing my darndest to keep plodding away at my friendship pilgrimage even when the conditions for it are a little tricky. I'm even being a little bit daring, making a few little hopeful plans for the spring... 

I recently started reading a book called "How to be Sick: A Buddhist-inspired guide for the chronically ill and their caregivers" by Toni Bernhard. (You've probably seen me posting about it on Twitter/FB by now, it's really wonderful.) I'm about halfway through it right now, and it's opening up my eyes a lot to how much additional suffering I go through because of not just my health issues, but the way I think about and react to them. 

One of the sections I read a few days ago was about "Patient Endurance" as a way of cultivating compassion for oneself. I think it's a really important concept, as living with or healing from (if that's possible with a given condition) chronic illness often aren't passive activities. You can't always just wait it out. A lot of the time it involves going through many, many experiences like the one I described at the start of this post. Physical pain or discomfort, improvements and worsenings, exhausting (and sometimes completely useless) appointments, exhausting travel to and from appointments, the emotional stress of loss and coping and the unknown, waiting and more waiting, isolation, the stress of having to constantly monitor, make decisions, take what's prescribed, wait to see if it will help or harm or do nothing, never mind sustain some elements of "normal" life like doing chores or socializing (if at all able), and maintaining the health of a romantic relationship if you have a partner, are all part of the equation of living with or healing from chronic illness.

Lovely fabric, pre-washed and drying

It can be extremely frustrating, tiring, overwhelming, saddening, and certainly can bring up feelings of anger, isolation, resentment, hopelessness... but these feelings only compound the pain and suffering. They don't help anything. Not that they should be suppressed, not at all. But as much as possible, when patience and enduring all these difficult parts can be done, when emotions can stay on an even keel, it's more possible to be present in the day to day, appreciate the small joys, and allow time to pass and change to come if it may.

Most of all, that ability to cultivate compassion for myself in what I'm going through, and to stop judging myself for being somehow at fault or not doing enough to get well, is allowing me a little more peace while going through this process that has no clear end or result. It's a work in progress, but I think the more I am able to shift my perception in this direction, the less additional suffering I'll have to go through.

Over the last couple months it's become very clear to me how much fear I have in me, and have had since a young age. I know this has surely contributed to my health issues, and that it contributes to them still. But fear is fear, I can't just stop it, it's deep and real.

I read on to the end of the "Patient Endurance" section... 

...instead of passively waiting for it to pass on through, there was a shift in consciousness and I just opened to it. Then the thought arose: "My heart is big enough to hold this fear."

And so, alongside all the other experiences of my life, I made room for fear. I felt a great spaciousness and expansiveness. Soon I became aware that a gentle smile had appeared on my lips as if to say, "Ah yes. My old friend, fear." And so the seed was sown for a new compassion practice: opening my heart to the full range of emotions that life has in store for me.

My heart is big enough to hold this fear... along with a little ray of hope.

Comments

What a beautiful post, and a touching view into your world. I feel that reading about your experience makes me a better and more compassionate friend, person, professional, and partner. Thanks for it. xox

Awww *blushes*, that means so much coming from you. I really appreciate the role you've played in me getting to this place too, it's bigger than you know. xo

I could have written this (although probably not as well). It is such a scary decision to move away from what medics instruct us to do and go with a deep and wise intuition, especially as it means facing such real terror. I have Lyme Disease and my decision not to take abx is a tough one (going for herbal remedies instead) but, like you, my gut was talking to me so loudly I could not ignore it.

It does mean facing an unknown outcome, and although it can be very scary walking away from the dictates of conventional western medicine, it has brought me closer to something I think I have always known (but so often resisted) - that living with chronic illness with all its challenges has enabled me to live my whole self and stop running from all that scares me. At times it can be such an ordeal but at others I feel like I am finally facing the truth of who I am.

Good luck for your journey ahead.

Hi Naomi - 

Wow, that is a very hard decision I'm sure - whether to take antibiotics or not. I can empathize somewhat, I've just discovered I'm having some kind of reaction to the antifungal medication I've been on, and now will have to decide between different/stronger ones, or going a herbal/supplement route.

I think the thing that is initially hard to accept, but makes things easier once we do accept it, is that we *never* really know what the outcomes of our choices will be. Once we are okay with that, it makes it a lot easier to live with the results of our decisions, whatever they are, and to make decisions that feel right for us deep down.

Best to you as well!

Did you see someone at the voice clinic & did they prescribe a PPI? That was my experience and I wonder about that diagnosis... not sure I want to take the drugs either... guy didn't have much bedside manner...

Hi JR -

I did indeed (I mention this in my longer previous post about LPR if you want to read that too), though I won't mention any names publicly of course, but if there was no bedside manner, it fits with my experience... Both he, and the ENT (not at the voice clinic) I saw the previous year, immediately prescribed high dose PPIs and said it was the ONLY option. 

Neither of them really wanted to hear about how this all started, or what else is going on with my body especially my digestive system, which I would think is pretty crucial info. 

I've been working with an Integrative Medicine doctor to try a slower approach, and because it's been so slow, I decided I should try the PPIs, but the first dose made me so sick I realized there was a reason I'd been wary of this all along! Interestingly, the old walk in clinic I used to go to who was a super old skool "seen it all" kind of guy, also agreed (after my initial diagnosis by the first ENT) that PPIs were a risky approach for someone with my existing digestive issues and food sensitivities. 

Honestly, my faith in "specialists" has erroded to practically nothing at this point.

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