Hunter Thompson would be proud

Some nights it's vicodin. Some nights it's beer. The key to avoiding addiction is to rotate your mind-altering substances often.

heeeeere's Johnny

If you find yourself gifted with the enthusiastic rejection of all things food and fluid, resulting in the sudden cessation of SSRI medications and then the sudden resumption of said SSRIs more than a week later, you too can look forward to a cornucopia of surprises, such as:

• nausea
• blurred vision
• panic attacks
• dizziness
• loss of balance

Now with new and improved metallic taste! Can you stand the excitement?

garden porn

Two weeks into hormone therapy, four days into puking and crying. Dammit, if Saltines and ginger ale are going to make me puke, and I need to eat something, it might as well be good. Blue, red, and Idaho potatoes mashed with the skins on, diced rainbow chard and beet greens, diced bacon, and minced garlic. All mushed together with real butter and milk, salt, pepper, and garlic salt. Super pretty and crazy tasty. Everything but the dairy and bacon came out of our front yard garden. I'm going to be puking in style.

the tortoise and I are one

It's taken me five hours, but I've gotten two loads of laundry done and half the delivered groceries put away. VICTORY!

fibro games

There are a ton of games you can play with a chronic pain syndrome. Today's game is Where Did THAT Come From? It goes like this:

1. Wake up in the morning. (Or afternoon. Your call.)
2. Roll a 1D20 (also known as a 20-sided die to the uninitiated).
3. Compare to symptoms chart to figure out if you're going to get out of bed today.
4. Roll again.
5. Compare to symptoms chart to figure out if you're going to puke today and how many times.
6. Roll again.
7. Compare to symptoms chart to figure out if you're going to pass a field sobriety test today.
8. Roll again. Repeat as many times as you like or until you decide to yield to the whim of the universe and cancel any plans and ambitions for the day.

The highlight of my game was the random and unexpected dizziness that had me lurching all over the house like the best drunks do. Forget about a field sobriety test. The walls were dancing! People PAY to impose that effect on their brain. Bet they're jealous.

cranky with a side of bitter

Time change. Throwing a little extra zip into the daily pile of medications.


...If I don't screw this transition up, it'll be a miracle.

cryptic wasn't one of my goals

So that last post didn't quite carry through as intended. I missed on explaining the middle step.

It's an unfortunately real commentary on how fast fibro symptoms can change. At this point, I'm caught in a spiral that usually leads to an ER trip -- pain levels get too high, I start to throw up from pain, I can't keep my maintenance meds down, I get dehydrated, and then I end up in the ER getting an IV for fluids and to get meds back in my system quickly.

It's frustrating to go from the "real life" goals to the "I'm a patient" goals in the span of an hour or two. I feel like I'm living a double life. I don't need a reminder that my body has a hitch in its functioning. I get that every day. But I get the swift kick version of a reminder multiple times a year anyway. Today's one of those days.

an exercise in flexibility

Original goals for the day:

• weed around lilac and peach treelings
• put away laundry
• wipe down dining room table
• sort mail
• read up on starting seeds
• a little yoga
• play with the kids

New goal:

• stay out of the hospital

The One

Everyone has their One. That one episode of Dirty Jobs that just turns your stomach. It's my favorite show to watch any time I'm in the hospital or ER, because it's damn distracting and comes with a hefty silver lining. I mean, instead of being in a hospital bed tied to an IV, I could be doing THAT. But tonight I found my One. Hagfish, aka slime eels. That much snot should never exist in one place. Beyond nasty. Yeeeuch. Thank you, Mike Rowe. I have found my gratitude for the day, and it's that I never have to catch, sort, or process slime eels. Ever.

self-love

I'm sitting here petting myself. Wrist to shoulder, ankle to hip, over and over. Go, go lymph drainage. Don't hate me because I live an alternative life style.

Is there an Option C?

Can't take the one med that ever really worked for nausea because it can cause Parkinson's-like nerve damage. Permanently. Yeah, I'll take the nausea, thanks. Tried some food today. Fail. Tried some vitamin C. Epic fail. Tried some crappy ginger ale with no real ginger and a butt-load of high fructose corn syrup, which I generally avoid like the plague. Go figure. That one worked.

Sometimes you can't win for losing.

pain redux

There's no such thing as cockiness when it comes to a chronic pain syndrome. There's no room for it. Just when you think you're on a good streak, your brain reminds you that there's no cure, there's no real remission, there's just the constantly swinging pendulum of symptoms -- if the pendulum were suspended in the middle of a hurricane, swinging in an erratic 360 degrees with wind gusts sending it into an unpredictable vertical spin.

All those words you apply to someone with a life-altering illness just don't apply in this scenario. Fighting, battling, overcoming, conquering, defeating -- them's fightin' words, and you can't fight the undefeatable. We need a new vocabulary, one that acknowledges the very different nature of an incurable chronic illness.

grace
steadfastness
cheerfulness
flexibility
endurance
strength
acceptance

It's such a different world. Through inspirational stories, we learn that refusing to accept limits is the way to beat an illness. Powering through and maintaining your pre-illness life shows strength and determination. That willpower and hope can beat a terminal diagnosis. Chronic illness doesn't speak this language. Refusing to accept limits results in more pain, more time lost, a longer recovery back to the New Normal. Powering through in an attempt to maintain your previous life does the same thing. Willpower and hope keep you from shortening your own lifespan in an effort to escape the pain but they don't change your diagnosis.

It isn't giving up to accept your new limitations. Acceptance is sanity. Acceptance means not beating your head against the wall. In a Head Vs. Wall battle, the wall will win. The win condition is: Not engaging in that battle in the first place. It takes strength and grace to face down the decades of pain in front of you and accept that you can still have a fulfilling life even with chronic pain factored in. It takes endurance and steadfastness to deal with the pain. Cheerfulness lifts you up, and lifts the spirits of the people around you who want to help you and can't. It's hard to be the one with a chronic illness. But it's also painfully hard to love someone with a chronic illness, to know that you can't slay that dragon for them. And flexibility is not to be underrated. It takes real flexibility to handle the essential unpredictability that a chronic illness brings to your life. When you can't predict if you'll be able to think clearly, move easily, eat without unfortunate consequences, drive, lift, balance, interact, it's difficult to hold down a job, volunteer, make a social commitment, promise your kids anything. Incorporating true flexibility into your mindset will allow you to take advantage of the good moments to their fullest without promising things you can't deliver.

Chronic illness has its own language. My battle isn't beating my illness. It's learning my new language.

blink and you'll miss it

...Where the hell did October go?

dear body...

Dear Legs,

Thank you ever so much for getting with the program. I am greatly enjoying your relatively pain-free functioning. And ditching those invisible bee stings? Beautiful. Truly.

Dear Arms,

You're usually my go-to working body parts. It's your turn to crank out. So be it. You've been troopers and I appreciate how you've limited most of your complaints to tactile sensation rather than muscle function. It's cool. Just try to limit the tantrum to a few days? Pretty please?

Dear Stomach,

Now darling, there is absolutely no need to make up for any perceived gap in symptoms on the part of The Legs. Really. It's ok. Take a chill pill and let me enjoy this respite. No? Well, fine then. I'm going on strike. No food for you.

Blah.

worshipping Ye Aulde Porcelain God

You know, months on end of nausea and vomiting is a whole lot more palatable when you get a baby out of the deal. Just sayin'.

tricks and treats

Discovered a little trick today to go with my treats. Certain cane bottoms, when in contact with certain tile floors in certain types of weather -- say a Dunkin Donuts on a drizzly day -- make a rhythmic *pop*ping sound as you walk. Like having my own tiny drum section.

what's the opposite of a Dear John letter?

Dear Food,

I like you. I want you to like me. Let's work on that, shall we?


Love,
The Chronic Pain Wizard

rainbows aren't just for bumper stickers

States of mind have color. Depression is gray. Suicidal is a sucking black hole. Monotony is a muddy brown. A ten-minute trip to the grocery store tonight delivered an unexpected burst of color to my mental landscape. There was the Jersey Italian father in the bread aisle throwing a tantrum because the store was out of his favorite bread, while his wife and kids rolled their eyes and worked around him. There was the redneck in line in front of me who borrowed my swipe card to get the sale prices on his stuff and then grilled me about how much I pay for gas and whether I use my gas points from the grocery store to their full advantage. Total gentleman about it, in his way. There was the grandfather in line behind me, who jumped in with some vignettes about how much it cost to take his wife on a date in '59, when gas cost 18 cents a gallon and he got paid top union dollar for his work -- $3.15 an hour. And the checkout clerk, who was clearly finding fun where he could, riling up his coworkers, swearing with every other word, challenging the grandfather to prove that he was older than 30 and mocking me for going for that 3 cent discount for bringing my own bag. The fact that I was up on my own two feet, no canes or wheelchair for the trip, added a whole freakin' rainbow to  the whole experience. It's been over a year since I felt confident and able enough to do that and enjoy it.

Bring on the sparkly fuckin' hearts and glitter.

unFUCKINGreal

Turns out that if you take Zofran (or any other anti-puking medication currently on the market) on a regular basis for long enough, you run the risk of incurring permanent neurological damage similar to that of Parkinson's disease. Would have been nice to know that six weeks ago.

Riddle me this.

A. Take Zofran daily, risk developing MORE neurological damage that I already do with my other meds, causing permanent damage to handle a disorder that mimics the feeling of major damage but doesn't actually cause it.

or

B. Don't take Zofran, puke every day, get into a pain-puking cycle of not keeping liquids or meds down, and starting jumping in and out of the hospital for dehydration where they will treat the nausea with -- guess what? -- soluble Zofran via IV!

or

C. Knowingly break the law, risk my clean legal record, risk implicating my spouse thus damaging his clean legal record and employability, and possibly risk custody of my children, and use marijuana to stop the puking, incurring no known side effects or permanent damage.

This is a seriously screwed system.

Don't get me started on having been handed a prescription for Zofran during my last ER visit with *no* discussion about glaringly serious side effects that I might need to be aware of. Just yesterday a close family member was casually informed by one of his doctors that one of the meds he's on suppresses the immune system, thus being the probable cause of his newest case of skin cancer. That's a damn nasty side effect. Given an established medical record of skin cancer to start with, this is another one of those glaringly serious side effects that a patient might need to be aware of.

It's absolutely wrong for medical professionals to depend on the legal CYA (cover your ass) paperwork that comes with a prescription to detail the risk factors when deciding to start a medication. The patient doesn't get those papers until s/he fills the prescription at the pharmacy. This is NOT informed consent. Nor does it take into account the patient's specific medical history or which risk factors are more likely for him or her.

Apparently I had a couple different rants in me today. More to come, I'm sure.

the Sidewalk Ambassador

Dear Sirs and Madams,

I assure you, I see every stare, every sideways glance, and every double take. The fellow walking down the sidewalk on his cellphone stopping dead to stare at me as I get out of my van and walk around it to pull out my wheelchair and wheel myself up onto the sidewalk. The college girls who hurry past me and then take furtive glances back as they wonder what's wrong with me. The mother who looks at me with sympathy and a small dose of "thank goodness that's not me" as she herds her children across the street while mine wait patiently for me to maneuver to the crosswalk.

As Sidewalk Ambassador, I am happy to answer your every question, from my diagnosis and symptoms to my medications, therapies, and prospective longevity. My children can amuse you with their ability, at the ages of five and six, to pronounce the rather long name of my diagnosis and to demonstrate their ability to push my wheelchair for me when my arms give out. We are eternally pleased to interrupt our errands to discuss my health and my children just adore it when someone asks if my disease is progressive, or terminal; because of course children that young won't figure out what those words mean. Likewise if there's a cure. I don my badge of disability with pride and live to serve your curiosity.

Remind me, where can I send my letter of resignation?