Monday, June 17, 2019

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 Pin 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.

Tuesday, April 2, 2019

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...


Monday, April 1, 2019

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.

Thursday, February 21, 2019

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...

Saturday, October 20, 2018

"For Whom All Other Options Have Failed..."

Those are seven scary words: "for whom all other options have failed..." but those were the requirements for the Occipital Nerve Stimulator study. I've learned that study is a golden standard among pain doctors.

"Have you tried everything?"

Yes, I've tried everything.

"Have you really tried everything?"

I was in the Occipital Nerve Stimulator Study.

"Oh, crap. You really have tried everything. Sorry, there hasn't been anything new since Lyrica in 2008."*

That's where I am in pain management. Out beyond the horizon in "we have no idea what the eff to do" land, looking at blank faces that read "our hands are tied on what we could do by insane government regulation, I have a family to feed..."

I'll overlook the fact the DEA is practicing medicine without a license if they would just let me talk to someone face-to-face.

I know a woman with Stage IV stomach cancer who can't get pain medication because of DEA regulation! ARE YOU KIDDING ME?? All because of a little clause that says if you use marijuana, even medicinally (hello? STOMACH cancer???), you are excluded from ALL narcotics programs. Period.


Um... Mr. Jeff Sessions, may I have a word?


Forget me and my pain, Stage IV stomach cancer and you're forcing her to die in agony. What the in the ethical hell has this country become?? This is Cruel & Unusual Punishment by fiat. We HAVE the drugs. They're completely AFFORDABLE. The SOLUTION is right there!!! But because of some moral panic over addiction, we're going to make this innocent, beautiful soul walk that path of pain...

Her life doesn't have to be Hell. Mr. Sessions, how as a Christian can you allow that? Have you no mercy???

God in Heaven, hear us.



(* As of writing this, that's ten years ago. That's how slow drug development is.)

Saturday, September 29, 2018

Psychology School (Pain Psych)

I'm just a soul whose intentions are good...
Please Lord, don't let me be misunderstood..."



So I reached out for some support services recently and made and enormous discovery: psychology does not understand chronic pain patients. Like... bad. Bad, bad.

I mean, you've seen in past me rant about how awful some of the literature is and there are things I would DEFINITELY NOT say to anyone in our circumstance. But I had no comprehension of JUST how bad it was. I met a woman there who had similar troubles for her stomach cancer. They didn't know what to do with her either. Thank God I had organized my thoughts here years ago. We were able to counsel each other.

So I need your prayers. I am attempting and have completed the first steps for a certificate in pain psychology. The need is just too great, and my ability to explain these experiences eloquently has always helped professionals.

Well, now they need to take me seriously. Because people are dying over this stuff. I've seen it on the reddit boards. The Opioid Crisis has pushed so many people off their meds that the suicides are skyrocketing.

It needs to stop.

I'm volunteering to try and stop it.

Wish me luck...





p.s. Apologies for the extended absence and faulty restart. It's been a rough time and I needed to hermit rather than spread my behavior around publicly. I was just too angry. I was frustrated with the problem. NOW, I get it. THEY don't get it. They think they do and they are oh so wrong, and have been wrong since Elisabeth Kübler-Ross, bless her soul.

I needed this experience to know what to do next. It's been a rough time, but I'm back.

Thank you all for remaining.

Monday, July 9, 2018

No Knife Mostly Microwave Quick Quiche

Requested by r/ChronicPain

Quiche is an egg soufflé pie that can feature all sorts of ingredients: ham and cheddar, broccoli and cheddar, spinach and onion, Italian sausage and peppers... whatever your heart desires. It's also a dish that can be eaten warm or cold, and easily re-heats. This recipe uses the microwave for a majority of the cooking, and takes about 30 minutes to make, all told (meaning you don't have to be on your feet long). Steps can also be broken up with rest in-between without any harm to the dish, so long as you don't leave the pie crust in the oven! I've also included Fancy steps if you want to do a little extra work, but it's written with quick & easy in mind.


Ingredients


1 pint heavy cream (can be whipping or light cream for less fat)
4 eggs
1c grated cheese (optional)
1/2c pre-chopped frozen veggies (optional)
1/3c meat or 4 strips of bacon (optional)
1/2 tsp salt or no-salt substitute
1 pie crust
{Fancy} 1 pat butter
Spices to top (your choice: black pepper/oregano/pepper flakes/paprika/etc.)

Equipment

Microwave-safe bowl capable of holding 4c liquid
Microwave- & oven-safe pie pan
Microwave-safe plate/bowl for bacon/meat
Measuring cup
Whisk or fork
Bowls for ingredients
{Fancy} Brush

Directions


Preheat oven to 450 degrees Fahrenheit


Remove pie crust from aluminum pan

For convenience sake, I go for the premade, frozen pie crusts. These usually come in aluminum tins, but can be removed easily but running warm water on the bottom of the pan then carefully patting the crust from the tin. The frozen crust will retain its shape and can then be placed into a microwave & oven safe pan.

Pre-cook crust

Once in the microwave & oven safe pan, you may choose to take the {Fancy} step of brushing the crust with butter. Otherwise skip to the next paragraph. Melt the pat of better in the microwave then brush outer crust with melted butter. Continue below.

Place EMPTY pie crust in oven for 14-16 minutes, or until golden brown on the outer crust.

Scald Cream

In your microwave-safe bowl, add the pint of cream and place bowl and contents in microwave. Microwave for 4 minutes on high. If a skin has formed on the top of the cream (it should), stir. Then microwave for one additional minute until the cream starts to bubble. If a skin has not formed, microwave at one-minute intervals until skin/bubbles form.

Set on counter to cool.

Prepare Ingredients


Measure out the meat, cheese and/or veggies you're going to use. Once the pie crust is finished baking, these will be spread on the bottom of the crust. If the meat needs to be cooked or pre-cut frozen veggies need to be thawed, microwave according to its instructions using your microwave-safe plate/bowl. Cover with paper towels to reduce microwave mess.

{Fancy} I sometimes cheat and use a knife here and cut block cheese into approximately 1/4-inch cubes. This will leave larger cheesy chunks in the quiche for a more authentic feel.

Scramble eggs and add to cooled scalded cream. (If the cream is a little warm still, that's okay, so long as it's not hot enough to cook the eggs.)

Fill Cooked Crust


Layer or mix (your preference) meat/cheese/veggies and place in the cooked pie crust.

Slowly cover with egg & cream mixture until full. Be careful not to over-fill (the amount of egg-cram mic will vary depending on the amount of meat/cheese/veggies).

Top with spices.

Microwave


Carefully place contents in microwave and microwave on high for 9-11 minutes until contents are cooked. There should be no puddle (see pictures below) and the eggs should be bubbling and bounce to light touch.

Raw...


Not yet...


Almost...


Done!


Let sit to cool & Enjoy!



Crust is flakey!


Saturday, June 25, 2016

FREE PDF Chin Up! 50 Ways to Make Money While Disabled SCAM

PSA If you find a link to a FREE DOWNLOAD PDF version of my ebook Chin Up! 50 Ways to Make Money While Disabled DO NOT give them any credit card information, EVEN IF they say you will not be charged. There have been several complaints against their over 100 websites and businesses, which also include online games, movies & other clickbait.

It HORRIFIES me to think that anyone is using my ebook to scam people, even more because of who my target audience is! I've tried to make my ebook as inexpensive as possible (most ebooks on disability law start at ten times the asking price), provide it free to folks already enrolled in Kindle Unlimited, allow folks to share the ebook in whole or in part. I don't want anyone to think they have to go through some blackmarket website to get the information they need. Therefore I am running a FREE EBOOK PROMOTION JULY 4, 2016!!

I'm allowed to do this five times through Amazon. This is the first of five, so if you don't catch this one in time, don't worry! There will be another soon. to get your free gcopy, just go to Amazon.com on July 4th and download. Simple!

Spread the word: DO NOT buy the PDF version, it is total clickbait! (As a rule, if they say it's free, but they require a credit card, it's not free.)

Feel free to comment here if you have the ebook and are willing to loan it out to others.

Thursday, March 17, 2016

My Peace

Peace is often the first thing to go with a chronic pain condition. Your body is not at peace. Your mind is not at peace. Even sleep refuses to be a safe haven. So when you do find the right combination of medications that puts the symptoms to bed, the peace that follows can be such a foreign feeling that its stillness roars.

My doctors and I have found that sweet spot, we know exactly where it lives, with a new added bonus: I require even less medication to acheive the same degree of control. The miracle required for improvement turned out to be very simple (and please don't laugh, I know some of you have been saying this for years): I quit smoking. Now I break out in hives if I try to take even one puff. What I didn't realize is how much of a toll fighting off that allergy was having on the rest of me! Now my pain is less, my energy is higher, I'm off the oxygen even at elevation and I'm feeling like a new woman.

This.

This is why I hang on with all my might. This is why I try to be grace under pressure. This is why I try new things and take the risk to travel despite it all. Because only once will it get so awful that there's no coming back. Every time before then is just another trial to go through to reach peace and happiness on the other side. Until it's the last time, time will always change things. It may not change the things I want changed with the promptness in which I want them changed, but that's just my impatience. If I am able to wait long enough, something new will come along for me. And it really helps to keep a good sense of humor in the meantime.

This is why I was so frustrated— because this peace was just outside of reach for so long! We knew the answer. We could see it right in front of us. But a giant chasm of beurocracy had opened up and we just couldn't get there from here at the time. And now that the chasm has be crossed and I've arived, all that frustration and stress is melting from my shoulders. I am in control of my pain, it does not control me. I have the tools I need to tame the beast. I'll never have to doubt my ability to do something. I know I can do it. No longer do I have to cautiously think about each move. Now I can move without thinking, which allows me to concentrate on better things.

The relief from no longer having to worry from moment to moment, "Am I okay? Am I going to be okay?" allows everything else. "Yes, I'm okay, what do you need?" That statement is the difference between an employee and a consumer. Put me on the production side, always. I will be a contributing member of society, with joy. The only thing I might complain about is my commute. Everything is manageable.

Peace of body, peace of mind, peace of life.