When Curly Fries Attack

While everyone is sitting around, waiting to hear about how things go with my new doc and all my highly-anticipated test results, I thought I'd share the stupid thing I just signed up for.

A JUICE FAST.

I know, right? It's what it sounds like-nothing but juice made from fruits and vegetables. For a while-10 days, to start. Can I make it 30? Hell, I'm hoping to make it til 9 pm tonight. Actually, I WILL make it, because Sky King is doing it with me, so there's accountability. And he knows me, so he will ask me, and I may be a lot of things, but I am not a good liar. Then, he will be all, "I thought we were doing this together" and "you know your body will feel better" and "this is for the long haul, sweetums". Well, maybe not that "sweetums" part. But the rest? Guilt.

Why are we doing this?

Well, it's a new year. Go ahead, scoff. But 4 years ago, we vowed to quit smoking-me after 18+ years, him after 15 or so. And we quit on New Year's Day.
We had quit tons of times before, on New Year's Day, on Monday, on the first of the month, all kinds of days. But in 2008, we must have wanted it more, because it stuck, and we have been smoke-free ever since.
OK, not entirely ever since. I actually quit on the 4th of January 2008, while SK can say he quit on New Year's. Funny story...

:::Jan 1 2008-just took over a child care center, and we are in the process of cleaning it to ready it for reopening on the 3rd:::

We were both doing great, using all our tactics for successful quitting:

• New Routine (new job, new location)
• Can't smoke at work
• Planned out the last few cigarettes so we would not wake with half a pack (all you quitters out there know-you can't leave half a pack, am I right?)
• Bought the nicotine patches-14mg for me, 21 for SK
• Got rid of all the paraphernalia-lighters, matches, etc.

We were all set. Things were going okay, even with the stress of a new business on our shoulders. We were all patched up, which helped immensely, and we were keeping as busy as possible, which was quite easy. Then, I went to work. I parked in the parking garage near my new business, and pushed the door to get out.
THERE IT WAS. A half-pack, nestled in the door pocket. Calling to me, with her strangled emphysema siren song-:::hack, hack, hack::: Aimee-love me, hold me, put me in your mouth, you know you want to :::hack hack hack:::
But I was strong! I put that pack into the garbage can inside the parking garage, and strolled off to work, with a huge list of things to do.

About 2 hours later, I had compiled a hefty list of things I needed at the store. So I had to go get my car. The siren song began again, getting louder as I approached my car. But how depraved would it be for me to rifle around in a public parking garage garbage can?  Gross.

I'm guessing it looked pretty depraved to the guy manning the closed-circuit TV. I dunno. He didn't say, and I was too busy sticking my patch on the dash and cramming a cig into my mouth to pay attention to whether he saw my panties as I dug in the 55 gallon can for my smokes.
I smoked like a broke stove all around town, gathering this and that, until my car was loaded up and I had so much nicotine in my bloodstream between the patch and the smokes, I could've killed a buffalo. As I got back work, I did the usual-breath mints, gum, body spray. Patch back on. Smokes broken into bits that can't possibly be taped back together (trust me, there's a HUGE difference between broken smokes, and smokes that can't be taped. And tape burns just fine. Stop judging me.) And I haven't smoked since THEN.

But back to the juicing...
So each year, we DO vow to do things better for our bodies. We join gyms, and try to stick with it.

This past year, we went back to the gym we belonged to and were paying each month. We planned on doing this because we decided to get my pain issues under control, among other things-some snooty jackass in a white coat said that regular exercise is good for joint pain. And fibro. And depression. Whatever. That, and we got the pics from our cruise, and we were not very happy with the looks we were sporting. Even Sky King, who has always been slim, was puffing up a bit. We both wanted (then, and now) to be healthier for our family, too.

So we went back to the gym. Sky King joined a Body Challenge, and ended up meeting a great group I eventually joined. We were consistent (me, less so, around flares) through November, when we had trips, house guests, trips, and more house guests. Honestly, if we could be good for 11 months, then take a week off for Thanksgiving, and two for Christmas, I think I'm okay with that. The detox sucks, though.

So the other day (the 2nd of January), I was curled up on the couch, trying to decide how soon to take my pain pill.  I had been increasing them since the holiday madness began,  and was pretty much at 1 to 2 per day.  Not a good plan, because they are not fab for the liver, and regular medsfibro, one for sleep. I'm just not too keen on the pain pills for me, at least for regular use. I must have spent way too many of my formative years in health food stores.
Anyways, I'm sitting on the couch, curled up. Monkey Boy is gone for the week, Princess is happily eating/snacking/drinking/watching TV without interruptions from parents and brothers. I even let her make a fort, so she's on cloud 9.
All I want to do is veg out (what I had hoped to do was take care of the Christmas crap, but I woke up without much energy, and so I decided to have a pity party). I cruise through the netflix, and happen upon Fat, Sick and Nearly Dead. My pal Jen had recommended it to me, even borrowed my juicer for a spell, and had good results. But last year was a big year of trial and error, and I never got around to it.  But now, the title is sitting there, all "watch me, I'm good for you".  I really had to contemplate: am I ready to start this? Nah, but maybe it will give me a kick in the pants, so I'm not so bitter about missing all my favorite junk foods. So I press PLAY.

Before I get into the movie, let's recap...
Me:

• Fibromyalgia
• Chronic fatigue
• Joint pain
• Depression
• Anxiety
• Raynaud's Phenomenon

...and who knows what else. You may remember my journey into eating better, via an elimination diet. If you can't remember that (and I'm too lazy to link the post here) just know that I spent 5 months eliminating a bunch of food, then slowly reintroducing each one individually back in, to see if it increased, or decreased my pain.  The results were significant, but depressing. Both gluten and dairy caused me significant pain and gastrointestinal problems. Over and over. I will probably continue to be reminded of this here and there the rest of my life. Also, I have gotten (mostly) rid of tomatoes, potatoes, eggplant and peppers. They are all members of the nightshade family, and cause joint pain. My mom, who suffers from degenerative arthritis in both hips, both knees and her back, cut these things out of her diet, and noticed a considerable decrease in pain as well. Don't knock what works, right?

Since I fell off the wagon, the only thing NOT waiting by the roadside was a pack of smokes, so I got some serious detoxing to do. That, and Dr. M encouraged me to reduce (eliminate? Please, oh God, NO) sugar consumption, that it may decrease pain as well. So, if only by cutting out everything yummy, and reducing stress to an almost undetectable level, I can live pretty decently, without much medical help, besides the two meds I take now. Not too shabby, til I want a taco. Really, I'm truly looking for a balance, so that I CAN do some living.

But I digress-the movie. Basically, it's about this Australian dude, Joe, who is obese, and has this crazy autoimmune condition that, among other things, gives him an awful rash. It looks a bit like psoriasis. And he goes on a 30 day cleanse, meeting and recruiting others on the way. After 30 days, he decides to do another 30 (Holy shit, right?) and winds up completely off steroids, with all his blood work coming back amazing, and he's lost like 60 pounds or something crazy like that.

Of course, Sky King got sucked in to the movie too. And at the end, he's all, "Well?  Let's go get some fruit!".

So here we are-here I am, pissy that he's not hungry, trying to remember this is about making me feel better, making me able to do fun things with my kids, instead of lay around doped up, waiting for bed at 3 in the afternoon, mad that my hands hurt too much to play Words with Friends or write a blog post.

A pint of Ben and Jerry's sounds delish right now.  But being able to walk with Princess to the park trumps ice cream. Today anyway.  And that's how I'm doing it, like any good addict will tell you-one day at a time.

Honey Badgers and a Nasty Drug Habit aka Health Update

I'm incredibly confused.

This past week, I finished up a course of prednisone.  The prednisone that my doctor only gave to me because I got so pissy with him at the last visit.  You know how I can be.  All, "I want to be able to have the strength to eat a meal with utensils at the end of the day...blah blah blah..." The drug which wasn't supposed to work, because my doctor says my pain is fibro, rather than Rheumatoid Arthritis. So, taking the prednisone was supposed to be a test, and I was supposed to fail.  But I passed.  Yay?  No, Boo.  Or something.  I don't even know whether to be happy. See how confusing that all is?  It's no wonder I forget to tape possible beat-downs on the sidewalk....

So, after the drugs made my pain go away and gave me enough energy to plan a week of meals as well as the shopping lists, decorate for Christmas, shop for just about everyone in the world both in person and online, go to work for several days including one day where I was there 8 whole hours, make two batches of holiday candy, plan a bunch of other shit, clean, wash some clothes, put away laundry, and manage to summon enough energy to have sex with my wonderful husband (which all my meds make me not want to do---I know, TMI, but you should know better by now...), and a bunch of other shit I can't remember I did but really did do, I sent a message to my Rheumy.

Me: Hey, Dr. W!  Funny thing--this shit is gold!  Gold, baby!  I feel like a crazed coked-up Studio 54  lunatic, and it's awesome!  It's like I'm Leonardo DiCaprio at the front of the ship, and I am QUEEN OF THE MOTHERFUCKING WORLD!  Gimme more, more, more, NOW! (or something like that.  I'm limited to 500 characters on the message-sender thing-y)
Dr. W: That's odd. Because your blood work definitely says it should not have worked. Now I'm terribly confused. And I still have that annoyingly nasal voice. I hope that comes through in text.
ME:  Ummm, no, I'm the one that is supposed to be confused.  You get the play the role of miraculous science-y person.
Dr. W:  I have no idea who you are, stop writing me. I've contacted my attornies.

That last part didn't happen. Well, it did, but only in my head. And here.

On Thursday, I went to therapy. I discussed this all with her, and I told her that Sky King and I were considering going off on our own, and paying out of pocket for doctors that might not piss me off as much.  You know, doctors that will, I dunno, listen to me.  Run lots of tests.  Listen more, do more tests.  Get to the nitty gritty of it, find out what is really wrong with me.  Cause frankly, I am sick of people telling me what they think things are, and that there is nothing they can do. And when medications work, I don't want to hear that that wasn't supposed to happen, and I don't want to hear that my blood work shows nothing wrong, and that my primary problem is depression!

I'm depressed, because I hurt, not the other way around.  So, like any lousy relationship where you say, OK, I will take you back, but if you screw the neighbor one more time, it's over, I'm going to break up with Dr. W. 
We will begin interviewing new doctors soon, and I'm going to take an active role in getting well. Instead of buying new boots for a body that may never get to enjoy them, I'm going to take my boot money (gasp!) and buy some better health.  (That's how serious this shit is-I'm willing to deny myself kick-ass boots, to get better! I know, right?  Seriously.)  I really have nothing much to lose. Except money.  Which I do get I am very fortunate to have-most people these days don't have that resource. Thankfully, that is one thing I have enough of to eat, have a roof, and piss away on vitamins, prescriptions, co-pays and other crap.

The confusion got worse later this week, when the pain returned.  It was slow at first with Today, I am in full-blown pain mode.  And all I want to do is curl up into a ball, and cry.  Or sleep til the pain is over. SO, I came home from working at my son's school, and I popped a pain pill.  Later, I will go to dinner with friends and enjoy a lovely meal. And I will probably get through the weekend hopped up on meds.  I can't figure out how else to cope with the pain, but the pain pills don't work for daily use. They are horrid for my liver, and I can't drive, or make rational decisions.  I just bought some crap I didn't need, because it was shiny and new.  This is not good for me.  Once in a while, fine. But daily, running around all "Honey Badger and are are soul sisters" might get me locked up.

But I certainly do some of my best writing when I'm tanked on hydrocodone.

See? Confused. And now my head is getting clear, which means I will be in pain again, soon.  Fuckity fuck.

Hopefully, the coming weeks will give me a clearer picture of what we can do to get this shit under control. Wish me luck.  Or wish the next doctor who pisses me off good luck.  He will need it....

How Ya Feeling?

 Recently, I have had people inquire if I am feeling better.  Which made me realize most people don't understand fibromyalgia.

It is not like other conditions or diseases-it's more like a roller coaster than a steady decline, or a bad spell followed by recovery.  And, it is different for each person.  Everyone has different aches and pains, different side affects, different reactions to medications. I have read accounts of other people that have it on blogs and yahoo groups, Facebook and real books.  I actually consider myself fairly lucky, in terms of the symptoms I have, the support system I have, the job I have.  Which does not mean I don't know how to throw a humdinger of a pity party though.

Here, in a nutshell, is what it is like to be me, with fibro.

Each day I wake up, after a not-very-restful-night of sleep.  I get out of bed and take a few agonizing steps until my legs begin working (which almost ALWAYS happens) while I assess my general body. By the time I have walked the 9 steps to the toilet, I have figured out what, if anything, is hurting (my therapist wants me to keep a journal to figure out any trends).

---At the beginning of my diagnosis, my husband and I would try to figure out what each ache could be attributed to.  This is futile, and depressing, because ultimately, you might hear your significant other say, "Maybe you ate too many shrimp this past week", or "Well, you DID work 5 hours yesterday", and then you get more depressed. See? Useless.---

So, I just make a mental note, then go on with the morning.  Pretty quickly, I figure out how things are going to go.  Some days, I wake up with energy and a happy body (and I will in no uncertain terms ruin that all by overdoing it, to take advantage of feeling so great...), and other days either my body, my mind or more spirit lets me know they are NOT on board with the plans for the day.  Even if those plans are just to get up and not swear at the kids. (Can you tell which things failed me THIS morning? Yep, body AND spirit-sorry about the grumpies...).

Each day is a complete reset. Yesterday usually doesn't have much to do with today.  Unless I overdid it.  Then, I will pay, except on the rare days I don't. See?

Remember the Spoon theory?  Each day, you have so many spoons.  Each spoon represents your ability to do things, like take a shower, call a friend, drive somewhere.  Once you spend all your spoons, you are done for the day, regardless of when you run out of spoons.  And, the number of spoons you wake up with is not predetermined. There's no way to know how many you will wake with.

Some days, I have tons of energy, and a little pain. Some days, no pain.  Some days, tons of energy, and tons of pain. Or, I feel fine (in my body) but I am grumpy, uncomfortable in my own skin.  Yes, I know, that is called depression.  I have it, been diagnosed with it, being treated for it.  It comes with Fibro.

And, my worst pain (usually) is in my arms-typically my elbows and wrists, sometimes hands. I know others that can't stand the leg pain. Or, back pain.  Each person is unique.

So, when I am having a good pain day, it unfortunately has no bearing on whether tomorrow will be a high pain day, or low pain day. Sometimes, the pain is hard to localize. Meaning, my body just has a low-level ache that encompasses everything. 

The mental aspect of it sucks too. Not only do I have a raging case of fibro fog-short-term memory loss-but it all really bums me out.  I mean, I know i have stuff to be depressed about, but normally I'm a pretty upbeat person.  And, sometimes the mind kind of takes over.

Most of all, I think about my body and my health almost all the time. I know that is not healthy, but I also know that it will ease up after some time. My husband keeps telling me that once we get through our first year since my diagnosis (Jan 2011), we will know how we navigated each thing we do, each weather change, each family gathering, each week. From there, I am hoping some of this will begin to come naturally.

Today, I had a great chat with a former colleague who found out she no longer has MS.  Yep.  NO LONGER HAS IT.  Her doctor said that he now believes in miracles.  One thing she said stuck with me, and that is that she never wanted to BECOME her disease. So, she told almost no one. Then, when she found out she didn't have it any longer, she realized despite her best efforts, she had become her disease.

I have become, for now, my fibro. My Reynaud's, my RA.  It's all me.  The person I used to be seems to be gone for now.  You know the one-the one that did so much, accomplished tons, was busy busy busy, and crammed everything she could into one day.  I would partially swallow, just to bite off more.  Now, it seems as if showering AND shaving, along with one trip to the store, and one doctor's appointment is TOO MUCH.  And right now, this crap seems to have taken over my life. I know that this, too, shall pass. One day, I may find that, even though the pain is not gone, I do not obsess about each ache. I will go through my days like they are normal, skimming over the discomfort, adapting to each number of spoons as if by rote.  I will be able to see the positive in everything more regularly, and my posts will be more about how awesome everything is, despite fibro. Not about how crappy everything has become because of fibro.


I do know that this year will come to an end.  I will look back, and I will see a lot of change, a lot of pain, a lot of hurt, and a lot of knowledge.  I hope that I can look upon the year and be thankful, more than filled with remorse for the life I have left behind.  I hope that I can dream of a day when all this is behind me, when the fibro is gone, when I can choose to tackle too much, plan a lot, be busy, if only for a brief time.
While I miss my old, pain-free life, my quick mind, my seemingly boundless energy, there are things I do not miss.

I don't miss being so busy.  I don't miss checking my calendar, only to note that I obligated the entire family to too much, and there is no room in our schedule for a bike ride, a spontaneous dinner with friends, a last-minute opportunity.

My New Diet

Today, I, began a new diet. I even invented it. It's called the my-wrists-hurt-too-much-to-shovel-german-chocolate-non-dairy-dessert-into-my-face-diet.

Was I Mussolini in a former life?

This shit ain't funny, and Sky King isn't home to spoon feed me.

At least I can blog from my smart phone via swype.

Love and Stitches

The other day, I got injured.  And, as you know if you have Fibro, an injury means a flare-up.  The stress of the injury, usually combined with the stuff you take to make the injury feel better (wine, Vicodin....), plus the anger at yourself for doing the stupid thing that got you hurt in the first place, combined with the fact that (insert random number here) years ago, you could have sucked it up, moved on, been good to go in a couple hours.  Not now, nope.  It's payback time.  Maybe the Karmic Gods are getting me for all the fun I had in college....

*** Skip this part if you want to pretend I am a responsible person that makes good choices.  Keep reading if you need affirmation of my non-stop stupidity, or want to spew a beverage onto your keyboard.

So, there I am, at work on a Saturday.  We had planned a work day, and much of the staff was at my child care center.  Also, the janitor was there.  One of the people that was there had put bagels in the oven to toast them.  Then, someone else said, "Mmmmm, what smells so good?".  Just then, two of us went running toward the kitchen, trying to ward off the smoke alarm detecting our failure. I was in the lead, trying to get to the kitchen. My Saltwater sandals, with zero tread, hit the wet floor, and I flew.  My head hit the door jamb, my lower leg hit something equally hard, and my right arm caught my fall.  I lay there for a bit, getting my bearings, waiting for the nausea to subside, when I noticed wetness.  Lots of it, too.  I realize that my head is having some issues. I cover it with my super-absorbent sweatshirt, waiting for the bagels to be saved. I ask someone, "Hey, would you mind peeking to see if I need stitches?"  She says, nope, and digs in. No bueno.
Soon, I am sitting, waiting for the husband, with ice taped to the ankle, and a blood-soaked rag holding more ice to my eye. 5 hours and three stitches later, I am bummed.  Not only because this all caused me pain, but the residual effects.

• I missed a training
• I will possibly (Who am I kidding---"possibly") be in pain for a while
• I have to let my friend down, who's son I was to be watching the next day-because my husband has taken over, knowing I won't say no, and said he forbids me watching extra kids the next day while he's gone with the birthday party crew
• My upcoming week at work is busy already, without having to deal with pain
• I just got to experience a couple good days after a nasty flare up

Also, I feel a little dumb.  Even my daughter said, "Well, you WERE running in the hall...." the same way I might say, "Well, you DID put your hand in the oven....".

See?

Then, to top it off, I see my look has already made it to the runway....

**********************************************************************

Anyways, there I am, at home, laid up with a banged up ankle, stitches on the eyelid, and major pain predicted for the foreseeable future.  It also happened on the day of my son's birthday sleepover. Brilliant, me.
my husband has locked me into one end of the house, and has meds, water and snacks lined up, along with some movies, and lots of extra pillows.  Every time I try to leave the room, I get sent back to bed.  He really knows how to take over when I need it, but fight it.  :::::swoon:::::;

In walks Princess, with her big brown eyes, dressed up like a true princess.  She says, "Mama, I'm going to make you something very SPECIAL."  I say, ('cause this has happened before and her last "something special she named 'vegetable chum') "oh, no, baby, don't do that, I'm just fine." She responds with, "Oh, don't worry, it will be with all the things you can eat. And, (as she scrunches up her shoulders, hands clasped, head tilted fetchingly) it will be made with a special ingredient:  LOVE!"  Crap.  There's no way out of this, unless her ADD steps in the save the day, and a family of squirrels plays tag on the roof......

Nope, no squirrels.  No other diversions.  She even needed help opening some of the ingredients.  no, bear in mind, my daughter is aware I am dieting.  She also knows I like to eat healthy.  So, bless her heart, she incorporated all my favorites, kept into consideration my allergies, AND produced a wonderful concoction:

I am one lucky Mama.  What you see here is:

• Daiya cheesey shreds, both mozzarella and cheddar
• Lettuce, organic of course
• Grape tomatoes
• Low-fat mayo
• Blueberries
• Chunks of fresh-ground peanut butter

And, LOVE.  Lots of love.  Can't you see it?






Yes, I tried it.  How could I not?