Friday, December 2, 2011

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.

Friday, November 18, 2011

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.


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.

Tuesday, September 27, 2011

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.


Thursday, September 22, 2011

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'.

Tuesday, September 20, 2011

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.

Friday, September 16, 2011

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?

The Chronic Pain Wizard

Sunday, September 11, 2011

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.

Wednesday, September 7, 2011


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.


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!


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.

Saturday, August 13, 2011

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?

Tuesday, August 9, 2011

Perk of the Day

Perk of the Day: Confronted with a two-inch concrete lip on the door to the public pool where my oldest is signed up for swimming lessons, I looked around and caught the attention of the nearest lifeguard for some help maneuvering my wheelchair over the sill. He was very helpful and wheeled me -- right on into the women's changing room. (No, no one was naked.) They were appreciative. I feel slightly evil.

Hey, if you're going to have to deal with inaccessibility to public areas, you might as well have fun with it before making That Phone Call to the city hall.

Sunday, July 31, 2011

beach day

I went to the beach today with my family. The beach was designed with access for the disabled in mind. Sectioned ramps leading down to the sand, tents positioned regularly to provide shade, a marked swimming area at the edge of the ocean with plenty of lifeguards on duty. There were lots of families there. Folks caring for and helping each other. It made me think. Sometimes you can't expect the bright miracle, the obvious victory over tragedy and hardship. The paralyzed man writing a novel using only a tongue switch. The woman who defeats cancer and chemo to maintain her usual hectic pace and professional career. Sometimes the miracle is quieter. You see it in the man who overcomes embarrassment and perseveres in stumbling through his slurred words when meeting someone who will never know the articulate man he used to be. The child who shrieks with joy as she clumsily scoops up handfuls of sand and sea water, barely noticing the woman who supports her weight and guides her movements. The family playing in the ocean together, all disabilities temporarily masked. The mother who decides to stay for children who will never know the choice that she made.

Wednesday, July 20, 2011


Stupid is:

  1. Missing an initial evaluation for physical therapy.
  2. Thinking that evaluation was in July, not June.
  3. Calling in July to check on the date and time for said evaluation, only to be informed that it was supposed to be a month ago.
  4. Making a new appointment for said evaluation, then finding out the prescription for it needs to be renewed.
  5. Calling primary care physician to get prescription renewed.
  6. Finding out primary care physician is on vacation for two weeks.
  7. Putting the office assistants through several hours of searching files, fax records, and computer notes for the original prescription in order to have the on-call doctor renew it.
  8. Not being able to pull that together before the rescheduled evaluation today.
  9. Missing said evaluation for the second time.
  10. Receiving a call from the physical therapy office informing me that the reason my primary care office couldn't find the original prescription is because it came from my rheumatologist.
  11. Oh, and the prescription wasn't necessary for the evaluation, only for any physical therapy following the evaluation.
  12. Now needing to call my rheumatologist to renew the prescription in order to schedule a physical therapy evaluation for the THIRD time.

Point One. Knowing that the prescription wasn't necessary for today's appointment would have been helpful BEFORE missing the appointment because I was under the impression that I needed the prescription in order to have insurance cover the evaluation.

Point Two. Fibro Fog. It's not just for breakfast, kiddies. You can enjoy Fibro Fog all day long!

Monday, July 18, 2011

fashion tips for the wheelchair aficionado

No No's

  • Long skirts. Your carefree gauzy maxi dress that comes down to your ankles and beyond, creating length and an aesthetically pleasing silhouette even while sitting down, won't look so carefree when it tangles around the wheels of your wheelchair.
  • Ditto wide-legged pants.
  • Short skirts. That flirty above-the-knee skirt that demonstrates a daring and fun-filled personality will demonstrate FAR more when you're in a wheelchair.
  • Form-fitting button-up shirts. This primarily applies to the more busty among us, and only if you're wheeling yourself. The motion of reaching back over and over to propel the wheels tempts the Button Gods (specifically the subsects known as the Thread Gods and Gap Gods) far too much.

Fashion Do's

  • Tea-length skirts and capris that hit mid-calf. Likewise tailored pants and longer shorts. Take advantage of that length of leg between knee and ankle. You'll avoid the embarrassment of your bare skin sticking to your wheelchair in hot weather and the pitfalls of wrapping your clothing around your front wheels.
  • Double-layered skirts, such as EcoQuette or Enwrapture Vintage, where you can tuck the bottom layer down to avoid a Marilyn Monroe moment but still preserve the look of a skirt with the top layer.
  • Fabulous shoes. This is where wheelchair accessorizing can get really fun. Those high heels and platform shoes that hurt like hell after 20 minutes on your feet? The ones that pose a real risk of injury? The flimsy shoes with the gorgeous beading that won't stand up to more than a block of walking? Go for it. You're sitting down. Rock the shoes and have a blast.
  • Layered shirts. You don't have the advantage of a full-length silhouette when stuck in a wheelchair. Create a sense of length in the torso by layering shirts and playing with hem and neck shape.

Any more tips from the trenches? Let me know!

Friday, July 8, 2011

the wheelchair training manual for parents

Those innocuous little ramps I used to jog up are damn steep when you're propelling your entire body weight plus 20-odd pounds of wheelchair up them.

The shiny metal rail is lovely for keeping your hands clean, as opposed to propelling yourself using the wheel itself. However, that shiny metal rail gets very slippery in the rain.

A five-year-old pushing a wheelchair can get you over small door sills and bumps in the sidewalk. A six-year-old pushing a wheelchair can send you out in the street in front of a semi lickety split.

In a group containing three or more children, it's best to have a timeshare plan arranged ahead of time for who gets to push the wheelchair when.

Foot rests are nice and all, but when your wheelchair decides to start drifting to the left with every push on the rail, it's really handy to have your feet available to correct your course.

Bicycle-type pegs on the back of a wheelchair would be awesome for carrying small children who don't want to walk any more.

Friday, July 1, 2011

Saturday, June 25, 2011


The youngest spawnling asked for walkie-talkies for his birthday. And he got them. Fourfold. Of course, this necessitated the big kids (aka the parents) to play with them test them out. And then it struck me. We've been struggling with a couple minor issues stemming from my disability. One being our intent to convey to the spawnlings that it is rude to shout to a person from the other end of the house rather than walking to them and speaking in a normal tone of voice. Of course, I shout across the house to them ALL. THE. TIME. If I got up every time I needed to talk to them, I'd be permanently crippled, and then I'd be right back to shouting across the house to them anyway. I'm pretty sure our neighbors think I'm an obnoxious loudmouth who always screams at the kids. (Hey, pipe down there in the peanut galley. It's not that funny.)

Anyway. In testing them, we figured out that their range extends over every part of our property and a good ways up the street as well. WIN! We're going to go through an ungodly number of batteries this summer, but I now have a way to reach the kids without making myself hoarse and they have a chance to break the bad habit that their parent has modeled so diligently for them over the past three and a half years.

It's the little solutions that make such a big difference in the quality of a day.

Tuesday, June 14, 2011

stepping outside the painted lines

Cheating circa 1990: Having two ice cream sundaes after dinner.

Cheating circa 2011: Taking the wrist splint off a week early.

Rocking it on the wild side, baby!

(Yes, you may laugh at me too.)

Thursday, June 2, 2011

you're fired

Dear saleslady,

You rocked it today, giving me a hand with road-testing the wheelchair and making pleasant conversation -- right up until you asked me what was wrong with me. It's so nice to know that a friend of yours had fibromyalgia and that she cured herself through sheer willpower because, you know, she's a "feisty lady." Gee, if I'd only known that the Power of Positive Thinking[tm] is all it takes to cure this beast invading my brain, spinal cord, fascia, nerves, muscles, and organs, well hell, I'd have been dancing in the streets years ago!

I could give you my moment of sheer rage. I could give you my feeling of inferiority for not being able to just will myself to health by being THAT KEWL. I could give you my resentment of your uninformed snap judgments and smug confidence based on genetic luck of the draw. But you'd have to try a lot harder to earn those. Sorry lady, your opinion just isn't worth that much.

You get this and that's it. These five minutes of posting time. Oh, and a big pair of hairy donkey balls. Go suck on 'em.

Chronic Pain Wizard

Saturday, May 28, 2011


Fairies are real. The mailman told me so. Facebook asserted that reality, too.

I got spoons in the mail today. A friend sent me a card full of cut-out pictures of spoons. Purty spoons, silly spoons, lots and lots of spoons. I'm rich!

The, via Facebook, I was informed that the playdate fairy is coming to whisk my children away for the afternoon today. See? Fairies do exist! And sometimes they drive minivans.

It's one thing to arrange emergency care for your children because it's a necessity while you get the rest or treatment you need to function. It's another thing entirely to know that they're off to spend a fun afternoon with friends, under solid guidance by adults you really know and trust. Rest and treatment come a lot easier then. Everyone's getting what they need.

So a big thank you to the Spoon Fairy and the Playdate Fairy! You just made my day.

Friday, May 20, 2011

Donald Trump has nothing on me

Wheelchair on an elementary school playground? Instant popularity. I'm on their level and I can give them rides. Wheelchairs -- the next big craze. Like Silly Bands. Everyone's gonna want one. Or forty.

Monday, May 16, 2011

spin your partner, do si do, round again and don't be slow

I've accomplished two diametrically opposite things this month. Seventeen months into this particular flare, I finally hit the point where I can start physical therapy, and I did. I also finally caved to reality and picked up a wheelchair. It's not as depressing as I thought it would be. I'm excited to be able to go on day trips with the spouse and kiddos again. My choices have been: A) Spend six hours hobbling around on canes and spend the next few weeks pretty much in bed or B) Stay home. Now I have choice C: Sit my ass down and go for a ride, see the sights with the small fry, and still be functional (ha ha) the next day. Life is good.

Sunday, May 15, 2011

recipe for an "interesting" weekend (serves 4)

Assemble as many of your ingredients as possible up to a week ahead of time so that you can see it coming. Prep the following and chill until needed.

2 sessions of contrast therapy
1 ambitious physical therapy session (3 whole laps in the pool -- impressive, no?)
4 standard weekly errands
5 days of dropping off and picking up children from school

Mix in separate bowl and add to chilled ingredients:

1 40-pound child with pinched fingers and a strong disinclination for anyone but a parent to comfort him
1 hefty dose of Mama Bear
1 regrettably long walk to the car with said child in arms, two canes, and a bag

Blend until mixture is only slightly lumpy, then spread in pan and bake until crispy. Enjoy the flu-like symptoms, migraine, and muscle aches as long as possible. Must finish by Sunday night; Monday morning does not treat this recipe well.

Wednesday, May 11, 2011

what to do, what to do

There are many ways to anesthetize a person. Local, regional, epidural, general, spinal.... Or the at home version: beer, wine, liquor, all three together. (OK, eww on that last one.) Sometimes, you've just gotta go for the DIY anesthesia. Like when you receive your second refusal in the mail for Social Security disability benefits.

It would be easier to swallow if your case worker would ever return a phone call. Or if you could look back over your work history and find a time when your disability didn't affect your ability to work. Or even if you could run a trial and see if you could work now (hey, did that, failed miserably).

I would LOVE to work. I put specific effort into developing several different fields in which I could work so that if one failed due to recession, physical ability, etc., I could switch to another. I remember digging out of my parents' steep hillside driveway in a snow storm to get to work on time in high school only to find that my coworker called out because he said he couldn't get out of his 15-foot flat paved driveway that morning. (And he got the first raise, because hey, a penis counts for a lot with some people.) I remember working with a baby snugged on my back and another at my feet. I remember working at the age of nine, babysitting for the twins up the street and sticking that money in my piggybank for a rainy day. I've always been a "good worker." I've paid my dues. What does that get me when I can't work anymore?

It's incredibly frustrating to not be able to work. It's insulting to be told that you should be able to work when you have tested that theory and failed it completely. I feel like there's some essential miscommunication going on between myself and the Social Security office, even though I know the real drive behind the refusals is that fibromyalgia isn't on their current list of accepted disabilities and they financially benefit by refusing as many people as possible. What's just business to them is very personal to the person on the other end of that mailed letter.

Man, this sucks. I want to do right by my family. I want to ease the burden on my spouse. My last chance comes up in a few months, when I go before an administrative judge to state my case. Wouldn't it be ironic if I couldn't state my case clearly because my symptoms or my medication got in the way? What on earth would I do then? 

Saturday, May 7, 2011

willful acts of optimism

It's not done in polite company, and it may be illegal in 13 states, but sometimes you've just gotta commit a willful act of optimism.

For example: I'm not unemployable, I'm exploring my options as a free agent. I don't sit at home alone all day; I'm giving lavish attention to a very lucky cat and tortoise. You can call it enforced rest; you can also call it meditation, premeditated napping, time to think, and companionable silence amongst fellow creatures. (Except the cat. He never shuts up.) And hell, some people pay a lot of money and risk jail time to do some of the drugs I have to take. Physical therapy can do double duty as weeding the garden, folding clothes, and using a cart at the grocery store instead of a motorized chair. High pain levels and limited mobility don't just cost me activities I want to do, they also get me out of all sorts of obligations. And how many 4-year-olds get to say that they know how to vacuum a floor? Or have their very own vacuum? Talk about spoiled.

Well, that turned a corner real quick from optimism to sarcasm. Hey, whatever gets you through the day.

Thursday, May 5, 2011

the foibles of memory

If you're wondering how many times it's possible to fill up the washing machine with soapy water and then forget to put in the laundry in the space of one week, the answer is five.

Wednesday, May 4, 2011

testing, 1, 2, 3

My son and I took a leisurely amble in the rain today. Apparently I'm good for about a quarter of an amble before seizing up. The similarity between myself and the carburetor in my very first car has come to mind more than once. We're both game, and sometimes we can be fixed with a bit of chewing gum and a bobby pin, but we're also cantankerous and creaky as hell.

Monday, April 11, 2011


We adopted a rescued tortoise a few days ago. He went walkabout on his own and got hit by a car. Cracked his shell on the bottom and took off a chunk on the top. Someone saw him on the side of the road and brought him to the vet, who patched him up and housed him until he was healed up enough to be adopted. Finally, a pet I can keep up with!

Wednesday, March 30, 2011

sports I could dig

I propose an addition to the Olympics sports roster: Disabled Parenting. Think about it. Have you ever tried to wrestle an eight-armed flying spaghetti monster (aka a 4-year-old boy) into clean clothes when your arms are numb and you can't move faster than a snail's pace? Or tried to catch said flying spaghetti monster before he bolts into a busy parking lot? (Canes make excellent arm extensions in that scenario, for the record.) Have you ever tried to keep up with a flock of social butterflies zooming in all directions, constantly making plans to be somewhere, doing something (aka a 6-year-old's desired social schedule) when you can't even add 2+2, much less drive, because you're so fuzzy-headed from medications and lack of sleep?

You could divide it up by activity and age range. Changing your baby's diaper with numb fingers? Go for the gold if you don't get poop on yourself, the baby, or the wall. (Well, yes, the baby already has poop on it, but imagine the possibilities if you don't corral those tiny hands and feet in time.) Shopping at the grocery store in an electric cart: the gold medal means you didn't run over your preschoolers (or anyone else moving erratically around you) even once. Bonus points for getting everything on your list. Getting children out the door for school on time, with their lunches and homework, and only using five spoons in the process? Definitely a gold medal performance. (Bonus points for getting the spoon reference.) Navigating the college search process with your teen, filling out paperwork, doing the college tours without crippling yourself or losing your sanity (hard enough when you're able-bodied!) -- that one should probably be considered a marathon event.

Winter events, hmm. That may be a whole 'nother post.

Friday, March 25, 2011

humor me

One of the funnier moments in my day has been coming here to post and completely forgetting what it was that I was going to post. I had it all thought out, had changed up the phrasing a few times, ironed out the wrinkles, added some sparkle . . . and it's gone. Ah well. Such is the life of the chronic pain wizard.

Tuesday, March 15, 2011

what would you have done?

The definition of an awkward social situation:

Parking in the last handicap spot at your child's school and realizing that the parent parked in the handicap spot next to you is A) the parent of your child's best friend and B) not in possession of a handicap parking tag (nor is the parent handicapped).

Monday, March 14, 2011

let's play a game called "what they really mean"

Round Two of attempting to get approval for Social Security Disability benefits.

What they say:
We estimate that it will take about one hour to read the instructions, gather the facts, and answer the questions.

What they really mean:
We handed an able-bodied intern an espresso, a dossier containing a brief bio and two or three medical facts, and asked them to fill out the paperwork based on what they were given. It took him an hour, so that sounds good. We didn't take into account your potential disabilities and how they might affect your ability to write, your medications and how they might affect your ability to think, or how much paperwork 15 years of medical and job history can generate. We willfully ignored the fact that your average person won't keep every single piece of paper generated by said medical and job histories in one place, filed by date, just waiting for the day they become disabled and can experience the joy of losing their ability to provide for their family and filing appeal after appeal with Social Security to prove that multiple hospitalizations and the inability to function on a daily basis does in fact interfere with one's ability to work.

What they say:
We comply with the Paperwork Reduction Act.

What they really mean:
You should have seen the size of this sucker originally! The Postal Workers Union complained after receiving numerous reports of back injury (ironic, huh?) and we were forced to reduce the volume by half. To remain on good terms with your mail carrier, we generously offer the option of faxing your application in. Twenty-four pages at $2.00 per page (plus the animosity of everyone in line behind you) isn't too much of a burden, is it?

After photocopying the work history section with my answers from last time, since they haven't changed in the last five months, it only took me eight days to fill out the rest of the appeals application. I achieved a kind of regularity to my work, writing three or four answers before my hand cramped up. So really, I suppose I AM employable. I just need to find an office that requires a very slow writer who takes frequent breaks and finishes ten lines of writing a day. Yippee skippee!

Friday, March 4, 2011

irony revisited

Irony is taking medication that kills your appetite and also causes you to gain 30 pounds. Who the heck came up with that one?

Wednesday, February 23, 2011

Smurfs and other happy musings

Just when you thought you couldn't hurt any more, your brain remembers that you have fingernails.

Monday, February 21, 2011


If you were to answer that perennial question "How are you?" truthfully, what would you say?

I imagine your answers would range somewhere from "I'm actually doing ok today -- first time in three months!" to "You could pound railway spikes through my knees and it wouldn't make much difference."

Other possibilities:

"I want to vomit and my ass is on fire."
"There are bugs biting me everywhere. Do you see them? Me neither."
"Somewhere along the line my brain decided I burned myself badly from the hips down. It feels just great, thanks."
"Another day, another 24 hours in agony. Joy."
"I smile because what the hell else am I going to do?"
"Well, five doctors and a cabinet of pharmaceuticals haven't fixed me. How do you think I'm doing?"
"Just waiting for that robotic body to come in. I paid in advance, so the brain transplant is free. Can't wait!"
"Every muscle in my body aches and I haven't slept in three days."
"The thought of feeling like this for the rest of my life makes me want to call for a do-over."

I'm fine, thank you. And how are you?

Friday, February 18, 2011

medication for the win

Off meds:
  • dizzy
  • headaches
  • muscle aches
  • nausea
  • nerve pain
  • stomach rumblings not to be described in any vivid detail
  • fatigue
  • cognitive issues (i.e. can't remember words, read the wrong words, flip numbers, can't do mental math)
  • big time memory issues

On meds:

  • dizzy
  • headaches
  • muscle aches
  • nausea
  • nerve pain
  • stomach rumblings not to be described in any vivid detail
  • fatigue
  • cognitive issues (i.e. can't remember words, read the wrong words, flip numbers, can't do mental math)
  • big time memory issues

Dear pharmaceutical companies,

You might want to work on that.

Sunday, February 6, 2011

irony is a constant

Surgery on Tuesday. My daily-use pain med is also a blood thinner, so I'm not allowed to use it for 5 days before the surgery and 7 days after. I guess this is where I'm thankful that we haven't found a med that really works on my pain levels yet. Otherwise, I'd be a heckuva lot more screwed right now.

Saturday, February 5, 2011

there's a special sort of hell...

...for the person who designed the application process for disability benefits. The initial application involves filling out an online series of forms. The estimated time provided to complete these forms is half an hour. The reality for someone who is actually disabled? Well, it took me over five hours. When I was able-bodied, sure, half an hour. Now? Ha!

Following the online forms, I received more than 20 pages in the mail, all to be filled out by hand. The kicker was that most of the information repeated -- several times -- what I had already submitted electronically. Oy vey. A friend with good handwriting kindly agreed to fill it out for me, over the course of several hours. I bribed thanked her with peppermint hot chocolate and filled out the parts that required me digging through ten years' worth of medical records over the course of two weeks, a few sentences at a time.

Follow that up with a 2.5-hour interview and series of tests with an appointed psychologist on the second floor of a building with no elevator. Popped my hip on that one and took four medicated days to get moving again. All this just to achieve the first pinnacle of the journey toward the possibility of contributing to my own medical care and my family's financial stability -- the first denial, received two days before Christmas.

You don't receive disability benefits. You EARN them.

Wednesday, February 2, 2011

You know....

You know you have fibromyalgia when.... feel sleepy at 8 p.m., after taking a 3-hour nap that afternoon.
...and you got 12 hours of sleep the night before.
...and you took a 3-hour nap yesterday afternoon.

You know you have fibromyalgia when....

...your medicine cabinet reads like that of a person with severe depression.
...and cancer.
...and epilepsy.

You know you have fibromyalgia when....

...your 4-year-old talks about conserving his energy.
...your 6-year-old pretends to walk with canes.
...and you take longer naps than your children.