Esoteric Pain

Esoteric (adj.) - designed for or understood by the specially initiated alone

Chronic pain is transformative, of that there is no doubt (Brain Activity Shifts as Pain Becomes Chronic Archive link: http://archive.today/mwlhV). What it turns us into, is not wholly under our control, but what <i>is</i> under our control, we have a responsibility to master. Chronic pain initiates us to a world that others cannot understand. We few, we lucky few...

I've lost a lot over the years, and that took me to a dark place. Things are so desperate now, that all bets are off. The cannabis, I was using for pain control, is now causing me to break out in hives. I'm already on an elevated dose of prednisone for the weight gain, and I can only take one Benadryl at a time because two makes me feel NOT good. I have nothing else for the pain: I'm already going through 300 ibuprofen a month and that is what my endocrinologist thinks is suppressing my appetite along with the chronic nausea.

And now the next 4 days are going to be humid af, so I'm in an outrageous neuropathy flare, the likes I haven't had since 8 years ago.

I am so scared. And with good reason. My weight is below the bottom of the BMI scale. I need to be on higher thyroid medication but my doctor doesn't want to suppress my appetite further. I am caught between Scylla and Charybdis.

But I was able to catch something good amidst all that pain: one of the pinnacle scenes of my comic, where the heroine is rescued by her handmaiden, in a triumphant scene of metaphorical weight. It brings a balance to the story that it was missing before. And for that, I am grateful. For that I'll take the pain.

I've got purpose now. There is meaning to this suffering. It's what I needed all along. Here is the baby the "birth pains" were missing. Here is the light at the end of the tunnel. Here is the Why that can make me withstand any How (thank you, Viktor Frankl).

So I'm not upset by the pain, awful though it is. I am worried about being allergic to a pain medication I have to keep taking for now. That's certainly not good. I'm gonna be laid up for the next 3 days with the rain forecast (and probably and extra day to dry everything out), and that is really effing things up.

I was supposed to see the dentist today (canceled), I'm supposed to get blood-work done this week (that's not happening by any stretch of the imagination), I have a pain appointment tomorrow with an MD who doesn't prescribe (more like pain psych) that I cannot miss at any cost (I might even need to go fancy on the Uber ride for comfort's sake YIKES), and if it wasn't for the excessive pain and hypersensitivity.... ugh.

But it's not so bad that I need the ER. There is at least THAT. I can surf this wave, no problem. This is only an 8, all told. I get brief moments of somewhat respite where it drops to a 7, and that's manageable. Not ignorable, but manageable. I'm not yelping out in pain at least.

I'm on that razor's edge.

But just watch how I can dance.

Anxiety? Ya think?

So I saw this pain psychologist, and he ran me through a personality test. I scored high on anxiety. So he referred me to a biofeedback specialist, but apparently even if you have slight asthma, that can ruin biofeedback. 🙄 Another medical option stymied by some other diagnosis. What else is new?

But then I saw this by @VoiceoverPete and it hit me: It's not that I'm anxious... It's that my anxiety is totally justified!

Give a listen:



That bad thing frequently comes to pass, and sometimes catastrophically. The pain— interruptive pain— is guaranteed to show up, if not now, within 20 minutes of now, usually less than 10. It may be a stop & take medicine pain level or a stop everything pain level, but it's coming.

And I fall super short of normal all the time. Several roommates over the years have expressed concern over the years. I was forbidden from hand washing dishes because I can't feel the dish to know it's clean and I can't see if they're clean because the same nerve damage ruined my eyes too. I have no confidence my "best" is good enough.

Thus, is it any flipping wonder that I'm anxious? It's actually pretty astonishing how calm I am. But to be fair, it's boring now. Unexpected? Sure. There's no warning. But it's pain so familiar, so... Tuesday, that it's just not worth a fuss.

The thing I hate the most is I'm such a waste of a human being like this. All this potential to give back but— crap. Hold on. It's medication time again...

Why it’s been so difficult to post...

I’m not in any shape to do what I set out to do here. I’m not in any shape to put a positive spin on chronic illness. I’m so overwhelmed, I feel immeasurably small.

First off, I know I want to live. Let’s get that out of the way. I may pray for death, but that’s completely different. I’m not about to force death’s hand. It’s painful and always regrettable. Besides, I don’t want to leave five minutes before the miracle.

And I may be a whiny bish right now, but damned if I’m not wore the hell out. I’m tired of being shut out of pain care just because my types of problems (both chronic pain AND chronic nausea) seem beyond their imagining. I’m tired of one ailment triggering another or making some treatment impossible or or or... I’m tired of being a complex problem. I may as well tattoo on my forehead: Here Comes Trouble.

I don’t want to bring you guys down, but it’s been a struggle the past few years, and it’s not good right now. I need to gain weight but I have no appetite. I need to be on thyroid meds but can’t because that will suppress my appetite. In the meantime I have hypothyroid depression and a really crazy roommate who seems jealous of my disability (if she knew the pain I was always in, she wouldn’t be so quick to wish for this... #AblesAreWeird)

I’m scared because I’m slowly wasting away and the ibuprofen I’m forced to take on the regular to keep the edge off the pain may be the culprit slowly starving me to death.

They HAVE the means to treat me otherwise, but muh drug war. 🙄


Send prayers, fellow pain warriors. I know you know they’re destroying us. Keep the faith. (And maybe flood the White House with letters sharing your struggle... https://www.whitehouse.gov/contact/)

Much love.

Miracles! Biofeedback Heart Rate Coherence & the No Fiber Diet

Let's start with the disclaimer: The Biofeedback Heart Rate Coherence has been recommended by my doctor, and he is monitoring my progress. The no fiber diet is something upon which I have embarked myself, from the suggestion of other patients.

Biofeedback

Let's be real. If you haven't seen the latest in #Biofeedback, you are missing out. I originally did biofeedback for relaxation & pain back in the '00 and I was not impressed. I could relax myself to amazing levels and it had no effect on my pain.

However, now there's...

Heart Rate Coherence

This shiznit blows my mind. I was completely skeptical given my previous experience, but WOW! have there been advancements. There's a whole protocol for breathing to bring the heart and breath into synchronization. Yeah, it sounds like some hippy dippy stuff, but I'll be damned if it didn't work!

Here's what happened: I'm using the (#nonspon) www.heartrateplus.com app (the pro version) for 20 minutes a day twice a day. I came back from my doctor's last night to do my first session at home. I was in terrible pain and was having so much difficult walking, I was bedridden. So I figured, now's a good time to try...

After 20 minutes, not only was I in less pain, but I was in SO much less pain that I was able to get back on my feet immediately (impossible with just rest) and stay on my feet long enough to cook an actual meal! That's an absolute miracle, folks. YMMV, but I highly recommend this app for anyone dealing with chronic pain and pain flares.

No Fiber Diet

I've had long-running problems with my digestion, and like most of you, I've done everything under the sun as far as elimination diets and so forth. But it's gotten bad with me. The nausea and gut pain have been so terrible, that even with some medication helping (cannabis), I've slowly shrunk down to 120 lbs, fifteen pounds lighter than my skinniest weight when I was dying and a full 25 pounds lower than a healthy weight for my height. I am skin and bones, and I was required to add potassium supplements because my digestion was so bad. That is NOT normal for adrenal insufficiency AT ALL. Normally you should avoid potassium with my disease. But I wasn't able to eat enough to keep my levels up.

Enter in Dr. Paul Mason, gut researcher in Australia: Effect of Reducing Dietary Fiber



I knew that fruits and vegetables were difficult for me to digest and would make me sick (especially fruit), and had pretty much eliminated them from my diet. However, I've also always thought that meat was difficult for mer to digest, and had been avoiding that as well. I was living mainly on grains and dairy. Well... looks like the grain was a bad idea.

So now I'm embarking on a No Fiber Diet, eliminating grains, nuts, seeds... Pretty much a carnivore diet, with dairy, sugar and spices allowed. Yes, this is a protocol I have made for myself, but based on research. I'm eating ground lamb, grass-fed ground beef, open-air-free-range eggs (eggs have historically been horrible for me, only to be eaten sparingly), young & cottage cheese (to avoid migraine triggers), nitrate-free bacon/salami, Greek yogurt, butter, milk, carbonated water, and my trademark Red Bull.

I'm on day 4 and my discoveries have been this:

1. I can digest meat! So far, so good.
2. Eggs, when thoroughly cooked, can be eaten daily!
3. My appetite is back!!!!

That last one is the biggest... I haven't felt hungry in years, despite the anti-nausea medication, and that is just amazing. My body feels like it wants to live again, and that... well... I'm not big praising something on scant initial results, but the results have been so beyond what I even though possible, I'm calling it now: these are miraculous improvements.

Dare I have hope again? We shall see...