It shouldn't have been unexpected, but it was...

"Plans? You-chuckle-you had plans?!" [insert maniacal laughter]

That's what Fibrofuckingmyalgia said to me today. I started out the day with such high hopes. I did. We finally got past our bitterly cold weather. A couple weeks ago, I unplugged the space heaters that we have in the kitchen to keep our pipes from freezing. And I decided that it was time to go ahead and put those heaters away for the year and put all the crap back in the cabinets so I could have full access to the rest of my kitchen. (we take most of the stuff out of the cabinets when we use space heaters, lest we become a statistic).

I had to go to the store today. I had to. The youngest kid will be home this week for Spring Break and I didn't have any food that she would need for, you know, living. She's been super-stressed out, so I told her I'd get comfort food ingredients. (she even quoted me on Facebook with that fact). So, I had to go to the store.

And the store was crowded. And it ended up taking me a lot longer than I expected. So, after zig-zagging the most giant of all giant grocery stores, I got home, got my stuff inside, put away the stuff that could be put away... and then my body said: "You're done. Sit down. SIT DOWN NOW OR I WILL DRAG YOU TO THE FLOOR LIKE A WEAK MUNCHKIN!"

So, I sat down. I spent the next couple hours trying not to fall asleep sitting upright. I didn't want to take a nap because I don't want to screw up my sleep cycle (again). After sitting for a while, I had trouble getting up. And by "trouble", I mean that I rocked back and forth and flailed like an upturned turtle till I had enough momentum to thrust my body into a more solid position for putting my feet on the floor.

On top of this mind-numbing exhausted feeling, I now have pain. All through my arms and legs. And by "legs" I mean "the entire area from my waist down and a little bit of my waist-up, but not all of it".

The weather changed again- it had gotten warm. So warm that not even a jacket was needed yesterday. Today? Its about 20° cooler and windy. Every time I take the dogs out, I can feel the cold seeping into my muscles.

All this time, while fighting the pain, my brain keeps fighting with the exhaustion. My attention span is almost to Goldfish Levels and I can't focus even on "The Princess Bride" which came on cable while I was upturned-turtling. (they're at the wedding scene- "Mawwage. Mawwage is what bwings us togevah today"- and I don't even care. Dread Pirate Roberts is here for my soul and he can have it. Maybe he can do something with it).

On top of all that, it looks like its going to be a gorgeous sunset evening. And I really want to go get some photos of that. But I also don't really want to stand outside and let the cold make my fingers so stiff I can't move them. But it looks like its going to be really pretty out there.

What I need right now is for clouds to move in and block out the sun- that way I won't have to go take photos of it. I also need a chef to come cook me dinner- that way I don't have to go cook dinner for myself. I also need a maid- that way I don't have to reassemble the lower cabinet areas of my kitchen by myself. And I need a dog walker- that way I don't have to take the dogs out.

I guess I should go ahead and charge my camera battery. And find something for dinner. And take the dogs out.

The cabinets can wait till tomorrow.

Or the next day.

EDIT- the clouds rolled in and I decided not to drive out for sunset photos. 

A new look... brought to us by fake insomnia

Tonight brought me a bout of Fake Insomnia. It started with the itching. You know the "thousands of hairy-legged spiders" itch thing... well, it was all over this time, not just my legs. It was annoying, at first. Then it intensified and the itching went from annoying to infuriating. I finally got out of bed.

I've been planning on re-doing my blog's look for a few weeks now, but I procrastinated myself out of it for all that time. And now here we are. I'm listening to a mix of house music (that I discovered because of DJ Phoole) and a Flo Rida CD. (fun fact, when I ordered that CD, I texted my youngest kid and said: "I just ordered a Flo Rida CD, is that weird?" She replied with: "A little..." and later told me that one of her friends thinks I'm cool because of this CD. Her mom would never listen to music like that! I'm the cool mom again! Yay, me!)... and yet, I almost procrastinated myself out of it again tonight. I hassled a young friend of mine over on Tumblr (something about cooties and how boys are gross), I stalked a few of my friends on Facebook, ate a granola bar... then I just had to get to it. This needed to be done and no amount of cootie-teasing and Facebook-stalking was going to change that...

When I started all my blogs- back in the day- I set a lot of it up so my mom could read them. She preferred a darker background and a slightly bright font. Well... I decided to clean up the overall look and make it brighter all around. Give it a bit of an update. Make it sleeker.

So, here it is- my new blog look. The same layout is still here, all the brackets/links/gadgets and such are just where they always were. The banner image is just something I threw together in Photoshop and it took about a dozen tries to get it centered the way I wanted it.

I hope you like it... I plan on doing the same to the Conversations with the Disabled Guy blog as well.

Questions and Answers, translated

Over on my Facebook, I don't want to be "that guy". I don't want all of my status updates and posts to be all whiny and seemingly attention-seeking. I mean, in general status updates ARE attention-seeking, because c'mon, do you really care that I can hear my clothes dryer while wearing my hearing aid? But I don't want people to give me head-pats and imaginary hugs for having this stupid disease. I don't mind when I get actual hugs (even if I'm having a flareup and it hurts, because that happens sometimes) and I hate to put on a smile and get medical advice from people because their mother's sister's aunt-in-law tried something and it worked for them. (c'mon, everyone with a chronic anything has heard THAT story before).

But in real life... there are times in my life when I have to leave the house that don't actually involve putting on awesome clothes and hanging out with several hundred people dressed in similar (and better) awesome clothing. And, sometimes, there are people out there who ask seemingly benign questions. And I've mentioned this before- but I'm too lazy to look up my own blog link, so I'm probably going to repeat myself a bit. But these people, they generally don't really want to know the real answer to the questions they ask, because they work in the industry that requires them to ask the questions or at least be polite (which sucks for them, because not everyone is like me or my kids and those jerks tend to take out frustrations on those people despite them having no control over what's happening).

Let me get back to the questions. The most loaded question I get these days is: "How are you?" And it comes in a few varieties- "How are you?", "How is everything", "How's things?", "Everything good?"

Of course, I answer these questions with: "Fine" or "Good", even the slightly truthful: "Okay" but things aren't okay. On any given day, I could answer with: "Well, I'm still feeling sad that my dad died. And I also feel guilty, because my mom died two years ago and I don't remember it being this hard on me. And I know that's because I still had Dad around, but the guilt is still there. I just really miss my parents."

Today's answer would have been: "Well, my skin is aching like a giant scraped knee and I'm feeling slightly itchy, so you can imagine how thrilled I am to be wearing clothes right now" but I didn't think that was the appropriate thing to say to the cashier at the grocery store.

"I have a red-hot railroad spike being hammered into my heel with every step I take."

"I considered going to the housewares aisle and using that ergonomic handled vegetable peeler to peel off the itchy layers of my skin."

"My muscles hurt so much right now that I feel like I'm on fire. On fire and recently hit by a truck. Probably a truck full of broken glass and gasoline, but otherwise I'm fine."

"The pain in the bottom of my foot feels like my tendons are being pulled so tight that they're shredding apart..." (alternate answer- "...my tendons feel like they're being sawed on with jagged glass.")

"My legs are swollen. These are boot-cut jeans and I can't feel where the fabric ends and my leg begins."

"I really wanted to take a nap in the bin full of pillows over there."

Well, that last one could be said by anyone, I'm sure.

There are only a few people in my life that ask me how I'm doing and I'm sure they want to really know. A couple of them carry swords, so if I'm not near a housewares aisle, I could still get my skin flayed if I were having that type of flareup near them. We could do a demonstration for the patrons. Educational! But for the most part, nobody wants to hear the real answers. And I can't say I blame them. I don't want to tell those real answers to most people.

Be warned- good people of Earth- if you ask me how I'm doing and I give you the bland "Fine" answer and you ask how I'm REALLY doing because you really want the honest answer- I might start crying. If you hug me, I can't guarantee that I'm going to let go. Things are gonna get awkward, people. Very awkward. But don't worry, no matter how awkward things get, rest assured that I leave my house fully clothed no matter how much my skin hurts. Because that's a level of awkward that even I can't deal with.

I leave you now with a mobile phone photo of how I sit while watching TV.

Sleep. Sleep is for the weak!

I am actually sleeping. Not right now, of course, because sleep-blogging is a talent I don't possess. I barely have a talent for blogging in general, but I digress.

I'm not sleeping well. I'm not at the level I was pre-diagnosis, where I was waking up every 60 to 90 minutes, but I can tell I'm not sleeping very good. When I go to bed, I don't sink into my bed with the slightly gushy feeling of someone on muscle relaxers. I don't know for sure if I'm waking up like before, but I know I'm not restful in my sleep. I've woken up having night sweats (yay, peri-menopause!) and I've slept through my alarms- yes, plural. I have four, set ten to fifteen minutes apart. And then we did that "spring ahead" thing and my brain is just laughing at me about THAT. I'm tired, but in that "I'm not sleeping enough" way and not the "I have a chronic illness so I'm going to lay here on the floor and cry for a while" way.

Today, I woke up about an hour after my final alarm and that was after going to bed by 1030 PM. When I tried to sit up, all my muscles were aching. My important joints (elbows, shoulders, hips- the "big" ones) felt like they were being pressed together and my feet weren't even on the floor yet. Even my abs hurt. My abs feel like I've been doing crunches. My muscles are achy and my joints are sore, and my abs feel sore and tight.

I've come to one of two conclusions.

1- I secretly work out in my sleep. I say "secretly" because even I don't know about it.

Or... 

2- I am secretly a superhero at night. And apparently, last night, while on my patrol, leaping from rooftop to rooftop and standing dramatically on building ledges with my hands on my hips as I surveyed the city's skyline, listening for a mere mortal to cry out for help, I obviously got into some kind of fight with a supervillain. It couldn't have been my archnemesis, though, because I didn't wake up on an oddly elaborate setup with a conveyor belt and a laser at the ready to cut me in half.

I can only hope that it is Theory 2 because being a superhero would mean I get to wear cool clothes in the off-season, but waking up all sweaty for no reason makes me lean to Theory 1...

So, those are the possibilities. Working out at night or Superheroing at night. Because who needs sleep?!  I mean, besides me, because I'm exhausted.

I handled it like a PRO!

I've had a few reasonable days since I had that needle jammed into my foot. I mean, no more or no less pain. Nothing to report, really, just normal stuff. The bottom of my foot still has that stone-bruise feel to it and upon standing first thing in the morning, I still want to scrape out the inside of my foot, but that feeling goes away after I drag my leg behind me to the other room. (I'm going to wait a full week before I decide if this whole event was a fail or not).

So, today, after turning off my "Good morning, time to get up alarm", followed about ten minutes later by my "Hey, you better get up" alarm and then my "GET OUT OF BED!" alarm and the "WAKE THE FUCK UP! GO TAKE YOUR PILLS" alarm, I decided I should probably get up... and I turned to roll my body into the sitting-up position only to be met with the searingly white-hot lava pain of a flareup in my left hip. Great. I finally get done favoring my left foot only to have my left hip decide to be a hot spot.

The weird thing about this flareup/hot-spot pain is that it only seems to cause me blindingly tearful pain when I move. If I don't move- and I mean at all- it doesn't hurt. But the moment I try to shift my gravitational pull in any minuscule amount, the muscles in that hip scream out in terror like they just saw a thousand spiders all at the same time. I audibly groaned as I stood up. I turned slightly and gorilla-walked along the edge of my bed.

What? You don't know what gorilla-walking is? Of course you do. You know how gorillas walk, hunched over, using their hands (in a fist) on the ground. Well, I do that in the mornings, using my bed. I walk sideways like that because, duh, the bed.

When I stood in the bathroom and put on my giant "I shoot RAW" T-shirt, my hip didn't hurt. But the second I shifted my weight to put my too-big yoga pants on, that white-hot pain seared through my hip. And it is the entire hip- from where my actual waist begins to the top of my leg where the hip gives way into the thigh.

So, quite obviously, I'm going to take it easy. I have to- according to the experts who say: "Take it easy during a flareup. Take it easy the day after a flareup. Take it easy if you feel like a flareup is coming on. Take it easy on those days when you feel good because you might trigger a flareup." I drag my body through my morning routine and I even take a morning nap.

That's all I've been doing today- taking it easy. I decided to take on this day, using the tools that I know will work in making me feel better- because (you'll love this), my new doctor didn't give me the usual annual refills on my pain meds. I called in my refill like always only to realize there was no refill on this one (there should be 12 months worth of refills).

So, after I had lunch, I decided to tackle this hot spot pain with a liberal helping of ice cream. I followed that mid-afternoon ice cream with a several hour session of sitting on the loveseat, covered in Chis, and watching whatever there was on cable because I left the Blu-ray player remote on the shelf above the TV. I tried to remain as still as possible, but as with anything that has a gravitational pull, I had to move a little bit, now and then. And each movement was met with that fiery agony radiating from my left hip. Using a cane is useless because I'm not having trouble supporting myself on this leg, I'm having trouble when I try to move this leg. You'd be surprised how important moving joints are to the act of walking.

Several hours after sitting on the loveseat, covered in Chis (and at one point, a German Shepherd), I had to get up. It was pure agony, but I got to my feet. I walked as slowly as I could without actually standing still and fed the dogs and fixed myself some dinner. I decided to go easy and for comfort food. (by the way, Erik, Enchilada Surprise and sour cream- DELICIOUS. Guacamole test is pending). And along the way, I put on my wicked-cool Wonder Woman crush cap.

None of this worked on the pain. I took a nap, then after the ice cream but before the dinner, I took a short nap (sitting up on the loveseat, covered in Chis, watching "Payback" on cable- good movie, by the way).  I looked fabulous, I ate delicious food, and I had warm and soft animals who care that I can't feed them if I die to look after me. And none of it worked.

I was "taking it easy" and it didn't do any damn good at all. I mean, I enjoyed mid-afternoon ice cream and the luxurious cheese-covered and sour-cream-topped dinner was fabulous, but I can't continue this type of routine every single day. I'm already the size of a smart car, if I kept that up every day, I'd be the size of one of those tiny houses.

The worst part of it is that as soon as I finish typing this, I'm going to need to get up and get something to drink. I'm already done with the water I brought in here a couple hours ago. Maybe if I keep typing, I won't have to get up so soon. I mean, I am a little thirsty and this water is almost gone, but if I keep adding words to this blog post, I won't have to get up right away. I should just keep type-type-typing away... That makes total sense, doesn't it? Go on, answer me, I'll wait...

And then the ANGELS started SINGING!

I had my podiatrist appointment today. And the pain has been never-ceasing. Worse upon standing, mornings are such hell that I've actually cried. And leading up to my appointment, I went back in this blog and read about my hot spots and to see when I started loudly complaining about this foot. And it seems that my hot spot issues were probably caused by this damn heel.

So, just like any other day, I dragged myself around my morning, drove the 25 minutes to the doctor's office (Not the VA hospital, the VA hospital doesn't see me for podiatry), and limped my way into the building. (then to the elevator, then to the office itself). I hadn't been to that office in four years and that time was when the doctor gave me the dandy shoe inserts that I still use today (because they're still functional and doing their job).

After all the usual stuff (blood pressure, weight, etc), the doctor comes in and yes, he's still as attractive as he was back then (a little fact I'd forgotten about) and he still needs a haircut. But I digress...

After listening to my story of the pain (OH THE PAIN), and how it started bothering me at least in September, he had me get my foot all naked and then he folded the hem of my jeans up... MY ANKLE WAS SHOWING! Scandalous! It didn't take much poking for me to almost leap off the table with the pain (OH THE PAIN!). He said, very cautiously, as if I were going to object, that he'd like to put an injection in my foot of- and I said: "Yes, let's do that. Right now. I'm ready..." That's right, I didn't let him finish.

You see, in 2009, I had my left knee replaced. And I had this pain (OH THE PAIN) in my right foot. While I was under anesthesia, Doctor Attractive came into the room and put some kind of injection in my right foot. I knew this because there was a band-aid on my foot and when I took it off, I could clearly see the injection mark. The big tip-off came when I stood up for the first time and my foot didn't hurt. Of course, at that particular moment, I was preoccupied with the blinding and freakish pain that was my knee replacement. I was also trying not to fall flat on my face because I was two units low on blood.  But I managed to get through my recovery and all the years since without a major flareup of the plantar fasciitis.

So yeah, when Doctor Attractive suggested an injection, I was all for it. Plus, it would be a lot easier and not nearly as messy as cutting off my foot and growing a new one.

What I had injected into my foot was a mixture of anti-inflammatories and Novocain. (I don't know if it was actual Novocain or a Novocain-like substance. Doctor Attractive is the type to scale back his fancy talk for us normal folks without the medical degrees). Now, let me share some photos. And the description of the ordeal will be among the photos.

This is my foot. Well, my feet, but you know, the naked one is the one with the issues. My ankle is mostly obscured by the angle of the photo and my jeans.  DON'T STARE AT MY BARE ANKLE, YOU PERVS!



Before he jammed pushed the needle into my foot, he cleaned it and blasted it with a spray that made it really cold. Then he grasped my foot and said, "You'll feel a light pinch now..." and that's when the gaping maw of Hell opened and Satan himself spit directly onto my foot.

I expressed that I was indeed feeling some pain.

Then he pushed the needle in further. And I expressed my pain, again. And I said: "Wow, that shit hurts. I'm glad I was unconscious last time."

After the Devil's spit area stopped burning, the inside of my foot exploded in a symphony of What-the-fucking-hell-man!? as he pushed the contents of the syringe into my foot. When he pulled the needle out and pressed the cotton to my injection site, it didn't hurt. Then he put a band-aid on it. And it didn't hurt.

He said that we humans (for the most part, all of us) have a few centimeters of soft tissue between the outside of our foot to the tendon that is inflamed. (he even showed me on a skeleton foot he had with him, but I'd put my phone away by then) and once "you push past the smooth easy tissue and hit a bit that starts crunching, you've hit the inflamed area..."

Let me show you the needle. And that's his hand... obviously, because I have freakishly small hands for an adult.



That's pretty damn big... how big? "About an inch and a half" was the answer. And how far of that was jammed pushed into my foot?



After a few minutes of him explaining to me that today should be good because of the Novocain, but tomorrow I might backslide a bit while it takes full effect (because it all depends on how your body reacts to injections. You might not be sore and bruised from a flu shot, but your neighbor might need his arm amputated because its gone gangrenous), he left and I put my sock and boot back on...

AND THAT IS WHEN THE ANGELS STARTED TO SING!

No pain in my foot. NO PAIN.

So, here we are, hours later and there is some soreness in the injection area. But it is absolutely nothing compared to the white-hot blinding pain that I had before.

The doctor also liked my boots. He liked my boots the last time, too (the same boots, well, the same style, newer pair, of course). He even said the same thing he said last time- that he could tell I actually wore my boots and didn't just buy a new pair to pretend like I wore them. (apparently, some women wear high heels, get foot problems and then wear flats to his office like he wouldn't be able to tell they spent hours a day in heels). And when he told me: "See if you can find yourself some boots with a slight heel to them, that will help a lot", I took that to mean: "Patty, I can tell you love your boots, but if you had some with a slight heel, you'd be much happier, so you have my professional medical advice to buy yourself another pair of Dr Martens boots- with a slight heel." That's how you translated it, right?

Now if we can get the weather to stop triggering my fibrofuckingmyalgia, I might be able to lose the weight I gained over the winter (I lost almost 30 pounds last summer and its all back now).

The best part was that I was visibly limping when I arrived and when I walked out- I was not. I walked like all you normal people out there. And those of you who aren't normal but are trying to appear normal... I was walking like that... instead of limping.

I can't come up with a clever title for this one...

There are a lot of things pain does to a person. It does its work slowly, sometimes, so slowly you don't even realize it. Like a river changing its course. Just one day it happens to be there and you don't remember it always being there, but you can't remember when it wasn't there.  Losing my hearing was one of those gradual things. I didn't realize how bad it had gotten till I was able to hear things again. It makes me wonder just how long I suffered through it (and my family, for that matter. Having to repeat things is annoying. Trust me, I know).

A few weeks ago, I had my usual followup appointment and I discovered I had a new doctor. I get a new doctor every few years because the Veteran's hospital in Madison, Wisconsin is a teaching hospital. Normally, when I see my doctor, everything gets updated across the board (I'm speaking of the medicines I take to stay alive and it includes my Hydrocodone and muscle relaxers). Of all the pills I take (I take blood pressure meds and water pills that are prescribed), the Hydrocodone is the only one that is refilled on a monthly basis. ALL the others (including the over-the-counter vitamins I have to take) are a 90-day supply (including the muscle relaxers). I don't know why this is, because I would think a 90 day supply of muscle relaxers would be just as bad as a 90-day supply of Hydrocodone.

Anyway, it took me till this month to realize that there's a pattern to things. Like I said, all my medicines are a 90-day supply but the pain meds. And I call in my refills with two weeks notice- just like they tell you to- so I don't end up running out. This time, though, I called in my refill and the automated voice told me that the prescription had expired and if I wanted to request a renewal, press one now. So I did. It said to "wait ten days" before calling back. I had two weeks, of course ten days is nothing.

Now, I get enough pain meds to take six a day for thirty days. I don't take that many every day. Some days I just take three at night. But as we all know, this past year has been the weirdest weather year ever. I have no idea when I'll have a day bad enough to require daytime pain meds. So, when ten days came and the automated number told me that "a request has been submitted, no action has been taken", I stopped taking any daytime pain meds. I started only taking two at night, and taking over-the-counter acetaminophen. (Hydrocodone is 5mgs of hydrocodone and 325 mgs of acetaminophen). Plus my nightly muscle relaxers. I called back two days later (so, twelve days after the request) and was told it was "processing".

I had several days where I needed to take pain meds, but I also had the luxury of not having to do anything or go anywhere, so I just suffered through it. They came in the mail before I ran out, luckily. And the day that the pills arrived, I took two. It was great. I noticed the difference within an hour. (then I proceeded to take a bunch of photos of bald eagles at a local park, trudging around in the snow for 40 minutes).

So, that's the usual bullshit. Pain here, pain there, sometimes less pain, sometimes more pain. And the new-normal bullshit... the pain in my foot. My left foot, to be precise. I always have foot pain- always. For the last 22+ years. I know this, because my son just turned 22 years old and it was while I was pregnant with him. Sometime between the end of Bristol (first September) and one of the other faires (first week of October, second week of October) or Teslacon (first of November), my plantar fasciitis flared up and has not stopped. I tolerated it because I had no choice. I had shit to do and it had to be done. Nothing helps- no pain meds can even take the edge off this pain. It feels like a red hot railroad spike is being ground into my heel every time I put weight on it. When I don't have weight on it, it is a dull, throbbing, burning reminder not to ever stand up again. Any time you see me at an event and I have any kind of limp, odds are that its my feet. My knees never hurt anymore (not since the knee replacement).

Back in the day, I went through a cowboy phase. I had the hat, the boots, even a Driz-a-bone coat. (I didn't wear the hat much, though). The slight heel on the cowboy boot takes the pressure off heel spurs/plantar fasciitis. That's how I survived for a number of years- when I was doing the four-miles a day concrete pounding in sneakers, I spent those days wearing cowboy boots. Well, I don't have cowboy boots anymore. I don't get to wear cute girl shoes with a slight heel either. Till now... A couple months ago, I discovered these boots...

And they worked. That little heel took some of the pressure off the spurs that create the pain at the slight-inside part of my heel. And, dammit, they look cool too! (they're RED!) Look... see how cool they are?

Well, they don't work much anymore. They do ease a bit of the pain, but instead of eliminating it like my old cowboy boots used to, they reduce it to a grinding bruise pain. That's hugely better than it was before, don't get me wrong. And if I could wear these every day, I sure as hell would. But if you have bone spurs, you know they don't only exist in the heel. I also have to tolerate it in the front of the arch, near the ball of my foot.

After months of this pain, I finally looked up home remedies beyond "a slight heel". Ice, stretches, elevation, rest... I've done it all. The ice part doesn't help at all. It just makes my heel cold. Stretches have their own issues with hurting like fucking hell- but I do them! Every morning before I get out of bed, I do a few stretches. Sometimes it helps, most times it doesn't. And rest... elevation. Sure, I'd sit down with my feet up if I could. So, I Googled "when to go to the doctor" and now I have an appointment next week with a podiatrist. I haven't seen him in about four years (shortly after my one-year followup with my knee surgeon). When I had my knee replacement, the podiatrist gave me some kind of shot in my right heel (same area), so I would be able to use my right side during my recovery. By comparison, that spur rarely hurts, even now. (I still have the general foot pain, though).

I'm going to make the suggestion that we just cut off my existing foot and grow a whole new one. They can do that now, right? This is the future we were always told about when we were kids, right? RIGHT!?