I put the PRO in PROCRASTINATION and PROGRESS!

Yup. We're up in the middle of the night again. And when I say "we", I mean me. And maybe you. I don't know your life, those hidden cameras stopped working ages ago. But mostly me, because I'm the one here right now. So let's get on with this.

Why have I procrastinated? Well, I was going to update the new medicine progress a couple of weeks after last month's post. But then I thought: "Hey, dumbass, wait till after your followup appointment on January 15th. That'd make more sense than writing something now. Duh. You're so stupid." (my self isn't very nice to my self in these conversations. Don't worry though, my self talks about my self too, so that's just the relationship they seem to have with each other.)

So, I waited. Then I had my appointment. And then I waited another five days because WHY NOT!?

Well, a couple weeks before my appointment, I seemed to find the sweet spot of the medication. I take the generic Cymbalta at night, with one 10 mg tablet of Cyclobenzaprine (muscle relaxer), and my nightly Hydrocodone (two to three tablets). In the morning, usually shortly before lunch (so, between 10 and 11 AM), I take two Hydrocodone. And then, for five to six straight hours, I feel good. (not including this utterly stupid condition in my foot).

You see, normally, I'll cook dinner. That takes anywhere from a half hour to an hour, depending on what we're having. It also uses my hands (because I don't use instant potatoes, because gross) and I'm on my feet the whole time. So, by the time I sit down to eat, I'm exhausted and sore. Then the Disabled Guy cleans up the kitchen after dinner.

I see the hilarious irony to ME not being able to clean up the kitchen, but the person I refer to as The Disabled Guy does. Yes, he's disabled, but his disability doesn't cause him physical pain. But back to the story...

I noticed something good was happening when I cooked dinner and cleaned up after myself as I went along. And when it was over, I sat down to eat, slightly tired, but not kicked-in-the-face exhausted. And I did the dishes after dinner.

A few days later, I baked cookies.

A few days after that, I baked the Disabled Guy's birthday cake and he didn't even realize it when he walked into the kitchen while it was in the oven, because I'd cleaned everything up and put it all away.

Then, I went to a photography workshop in Chicago. (spoiler alert- it was awesome). You want the link to those photos? I know you do. Here's the link to ~Cupcakes and Instaprints~

Then I baked cookies again. I went to the store. I did things. And as long as I kept up that cycle of medicine, I was able to do things in large blocks of time in the middle of the day. I seem to have found the exact balance of pain medicine for now. At my followup appointment, the doctor decided to keep everything the same (medication-wise) and when I feel confident enough to handle the task, I can try walking for exercise again (there's ice out there right now. As good as I feel, I don't want to slip on the ice and completely fuck up my cyborg knee).

The only thing that is still pissing me off is that goddamn left foot. There's not much we can do about it because I'm taking the vitamins associated with helping neuropathy and I've gained a little sensation back in the numbness. But I'm double-cursed with that stupid thing because not only do I have fibro, I've had my knee replaced on that side. And that can cause an issue with neuropathy.

Sure, I still have bad days- I mean, look at me, I'm here... middle of the night- but the good days are coming in longer stretches and lasting for longer stretches. I don't dread going to the store as much as I did before. Now it's more of the "Great, there are people in there" and less of the "Great, I have to walk in there" than it was before.

I can tell you exactly why I'm awake tonight. It snowed. After several days of our temps in the low 40s (that's in Fahrenheit) and with humidity well over the 50% mark, it started to snow this evening. And I was in bed with my hands throbbing from the pain and my legs were on fire. They still are. Not literally, of course. Just in that itchy-one-million-hairy-legged-spiders-trying-to-escape kind of way. On the plus side of this ridiculous insomnia, I'm washing one of my super-soft blankets. One of the cats decided it had been clean long enough and hoarked a hairball on it- which I saw BEFORE climbing into bed earlier- so it needed to be washed. And the lack of that blanket contributed to the itchy-on-fire leg thing. One blanket did nothing to ease any fibroinations (just made that up, right now. You're welcome!).

So, good things. Yay! Fewer bad things. Yay, again! Photography. Yay! Oh, and I get to see a bunch of my faire family in a week and a half. I'm going to an event called Military History Fest where a bunch of them are re-enacting military historical stuff. I mean, c'mon, it's right there in the name. So, Faire Family! YAY! MORE PHOTOS! YAY!!

And, now I leave you with some photos from my Instagram... because you deserve to DIE from the cuteness...

Gypsy. (She doesn't have a "full name", but we call her "Gypsy-doodle" & she answers to "Doodle", "Poodle", "Dood", "Poopy-Puppy", "Poopy" & the kids call her "Doodle-head" sometimes). But she's a dignified wittle poopy-puppy. #GSD #germanshepherd #dog #pet

A photo posted by Pahz (@pahz_on_instagram) on Jan 20, 2015 at 9:25am PST

"I'm not looking at your, therefore, you cannot see me." ~Luna #chihuahua #dog #pet #sassy #somuchsass

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 10:01am PST

Bruno and Jasper. All the dogs were in this shot before Instagram cropped it. #chihuahuas #dogs #pets

A photo posted by Pahz (@pahz_on_instagram) on Dec 29, 2014 at 9:04am PST

Gregg the Girl Dog with the Boy Name. (We just call her Gregg). No big story, just adorableness. #chihuahua #dog #pet #sunshine

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 9:52am PST

Houdini (aka: Beefy). She could have been living with a jouster and his family, living a fun life and traveling the country with horses and other dogs, but she wouldn't bond with anyone but him. She was scared of him in his armor, even if he was just wearing the greaves. So, after 2 months of trying to acclimate her, he sadly had to give her back. Now she lives the boring life with me and the Disabled Guy (and the rest of the dogs. #chihuahua #dog #pet #sunshine

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 9:48am PST

And it goes on and on and on and on and on and on...

Yup, you guessed it, I'm still having this flareup. I counted the days and I'm at the end of day 34. Every single day is an effort to get out of bed, followed most days with a nap after breakfast. And I had several days in a row where the very act of pouring cereal into a bowl, getting milk, and then eating it with a spoon was too tiresome to complete. (this is why I keep some Special K cereal bars around).

In between all of these stupid pain-filled days, I've had obligations to fulfill. Payday errands, grocery store trips, doctor appointments, Mother's Day boat trip and the Janesville Renaissance Faire. And those days meant I didn't get a nap. But I soldiered on. I trudged through the pain and had fun (at times) and did my job (which was part of the fun).

Now, my usual "days following faire" are spent in this chair, editing my photos (I shoot RAW, in case you forgot or don't care), and not physically moving all that much. The pain is typical of two-straight-days-of-physical-activity, but this time around, the fatigue spin-kicked me in the back of the face. Sure, the pain sucked- the arches of my feet had bruises (still do) and my back and hips were just screaming in an off-key, drunken way. It took me three days to edit the photos that should have taken me two. (I shoot more at Bristol because of the jousts). I slogged through the pain at the faire like I always do- slightly whiny and sitting down as much as possible (but I did stand a lot too, because sometimes you have to). But sitting here at my desk, I was so mind-numbingly exhausted that I would sometimes doze off with my hand on the mouse (thank the photo gods for the "undo" option in Photoshop, AMIRITE!?). And I've felt hot. Like I'm slightly overheated for no reason. I have central AC. I never have to feel hot inside my house.

The weird thing happened today. We had- I'm sorry, this "we" is actually me and my youngest daughter (she'll be 21 in a month)- we had to go over to my dad's house and then to the grocery store. But, I also shampooed the living room carpet. And as we were walking out of the grocery store, I felt my Vicodin wear off. I could feel the pain come back to me in a wave from my feet all the way up. After that initial wave sucked the breath out of my chest, the burning pain settled into my hip and lower back. My hands and wrists have been extra annoying these last few days, too. (I needed to throw that in before I forgot).

Now, back to the weekend- which was wonderful, because I got to lace up in a steel-boned bodice and flounce around outdoors with other people wearing equally silly clothes and doing their own flouncing. Also, I was able to get myself a Mother's Day gift from my friend, Joshua. He makes jewelry and I got myself a necklace made of cognac amber and bloodstone with a gold and blue tiger's eye. It's more awesome in person (you can see the details in the stones, that's why). Anyway... the weekend...

The same thing that happened at the Mother's Day pirate ship shoot happened at the Janesville Faire. If someone asked me how I was, they meant it. They knew I was still in the middle of this stupid flareup and they weren't just being polite when they asked if I was doing okay.

OH- someone who shall remain nameless said: "Well, they're actors. They were probably just acting like they were concerned." And you know what I say to that? (I mean, aside from: "No, you shut up, Nameless person") I say so what? If they were acting like they cared, they were doing a damn good job of it and it made me feel a little better. BECAUSE THAT'S ALL IT TAKES SOMETIMES. Sometimes just knowing that someone believes you and gives a flying rat's ass about your well-being is enough. (for the record, I don't think they were "just acting", because they're good people, dammit).

But let me repeat that one bit- Sometimes all it takes to help someone feel better, even with physical pain, is knowing that someone cares about them. That someone believes them. Especially when you have an "invisible illness".  (In case you couldn't tell from the above two paragraphs, I live with a naysayer).

Now, just because I was AT the faire and I take photos, I'm sharing a few of my favorites. I don't care if I shared the link to the whole album up there. I'm sharing them anyway. And also, a video- of the sea captains on the water, where they belong.

Post by Patty Smith.

And now, some photos...

Anne-Drew made herself a beard of sponges. 



These are a progression...



Frobisher and Hawkyns kept talking and cracking me up. Thee Bluebeard finally gave in and laughed out loud too.



Then he composed himself and became stern...



And then THIS happened (this is my cover photo on Facebook now).



Anne-Drew and Captain Grace O'Malley



To the Point, the fight cast. 



A real life fairy and her daughter. 



A Day in the life... 



Bristol Buskin Frolic (two of many, actually)



This was To the Point on Sunday. Josh (on the left) couldn't be there on Saturday, so I told them to pose like they were fed up with him and for him to look smug.



Captain Sir John Hawkyns



Thee Bluebeard is shocked!



Captain Frobisher isn't listening to you.



Yes, you are seeing this correctly. That's the Disabled Guy at the Janesville Renaissance Faire with my sea captains. No, he didn't attend the faire. He came out to fix the treasure chest he'd made for them. And he agreed to pose for a couple photos. I had them all pose with their arms crossed and scowling, like he was. 

May 12th was Fibro Awareness Day

And I didn't post a blog about it because I was busy. And I didn't get to it on Tuesday, because I was busy. (I had a cardiac stress test at the VA hospital and I was gone from 7 AM to 4 PM. The last thing I wanted to do was concentrate on anything. By the way, the bruise progression from two failed IVs can be seen here and then there's today). And Wednesday, I was... well, you get it.

Anyway, here we are. I'm still having the same flareup I was bitching about a couple weeks ago. So, we're beyond what a "flareup" actually is, I think. Now, despite this goddamn flareup, I didn't let that stop me from enjoying Mother's Day. As most of you already know, I spent Mother's Day on the Tall Ship Windy in Chicago, with the "Bristol Pirates". That's just what we collectively referred to the group as, even though it isn't their official name. It was all the "sea faring" characters/historical people that could attend. Why was I there? Well, to photograph it, of course. And, here is the link to the Flickr album. I drove into Chicago, met up with Tabitha and Ansel at their home (and Josh, because he lives nearby) and we all took the CTA (public transportation) to Navy Pier. Along the way, we picked up a few more Bristolians. Bristolites? And at the destination, we met the rest of our party. And as you can see, it was so much fun.

I didn't let this flareup stop me. And because I wasn't one of the characters, I was in regular clothes. Jeans, shirt, and a thin cardigan. And in case you were wondering, there are A LOT of stairs involved when taking buses and trains through Chicago. I managed to do them all without falling down. And then I drove two hours home (it would have been 90 minutes, but TRAFFIC). And while on the ship, I was so exhausted that I could barely stand up, but I got the shots. I was a little wobbly on the ship, so I had to stand with a body part against a part of the ship (like leaning with one leg pressed against a bench or railing or something). And the people I was traveling with were wonderful. They didn't make me feel bad for slowing down the whole group. And when I said: "I'm on day 27 of a flareup", they didn't sigh and roll their eyes. (I was guessing on how many days it was, and it was pretty close to accurate). And they all agreed that after an entire month, it can no longer be called a "flareup". It is now a "spell" or "incident".

 I had an amazing time and the only thing I would change is the cardigan and jeans. It was warmer than I expected and I could have just done an over-shirt or even just worn a T-shirt instead of layers and if I do this again, I'll wear a skirt. (and my photos turned out really well- Ivan's were even better. If you see the photos of pirates on the CTA floating around, you know why. ).

Anyway, this blog post is supposed to be "my story". I'm not sure what I haven't already said about this stupid disease.

In late 2004, the edema started. It was "unexplained edema", then it was caused by the perimenopause. Eventually, it was called "unexplained" again. In 2005, my energy started to drop. It got so bad that I couldn't keep doing my four-miles-a-day walking. So I cut it back to three miles. Then I cut out my half hour of yoga. Then down to two miles. When it got down to one mile, I just stopped. It didn't seem to make sense to keep going when all I was doing was walking down the street and back. I started complaining to my doctor almost immediately. When the weight gain started, the doctor tested my thyroid. It was a little off and he adjusted my thyroid medicine. And it helped for a while.

March 3, 2006 was the day... I walked outside at 7 AM, to take my wooden cane to the garage so the Disabled Guy could sand the paint off. I was going to give it away. But that day... I stepped out onto my wooden deck and took two steps and slipped on the thick layer of frost. I STILL cringe when I think of the pain I was in when my knee went completely fucked. It was the beginning of the end.

Over the next 12 months or so, my VA doctor tested me for a slew of things. I had so many tests that I'm pretty sure I glowed in the dark when it was over. They ruled out everything. I had an incident with ibuprofen in the middle of the testing process that made us realize I wasn't able to use it anymore (it caused me to swell up so big that I lost feeling in my foot). And just around the time those tests were done, my doctor graduated. I liked him, though. He was a good doctor. (I used to refer to him as "Doctor Doogie" in my blogs because he was so young). Then, I had a woman doctor for a couple visits. She finished out Doctor Doogie's orders on some blood work and then she was gone. And I ended up with him.

Jerk Doctor is how he was referred to in my blogs (those blogs are gone now. Long story including a reinstall of an operating system). He kept telling me- as I was continually putting on weight- that "your knees would feel better if you would lose weight. You need to exercise." and not even five minutes later, while discussing the plantar faciitis and tendinitis in my feet: "You need to stay off your feet till they stop hurting." All the while, the pain I was having was getting worse. I thought that it was my joints hurting because my grandmother had rheumatoid arthritis. I asked about that- he said the test was negative. He had me keep food diaries- which I was totally honest on, I even measured salad dressing- and kept telling me to exercise and to not exercise. I brought up this weird disease- fibromyalgia- and he shot it down fast. "No, you don't have that. Don't even worry about it."

During this time, my knee never healed. I ended up walking with two canes because my other knee started to go bad. I was sent to nearly useless physical therapy. I was given two matching canes (which I named "George and Gracie") and I was given two knee braces that didn't work. In fact, they hurt a lot and left bloody dents on my thighs. And, after three years, he said: "We've exhausted all other options, so I'm going to give you a referral letter to see an off-site orthopedic surgeon." (he actually said: "We've exhausted all other options, so I'll get you that referral..."). Six weeks later, I got the referral letter in the mail and a month after that, I was inducted into the Cyborg Army.

Now, that massive surgery triggered a year and a half "flareup" and I suggested "the fibro thing" again. And again, he shot it down. So, one day, I printed up the list of symptoms. I marked off the ones I had (which was all but the "hair loss", "depression", and "decreased sex drive"), the frequency of which they bothered me, which ones could have been my thyroid problem, and I had two paragraphs of how my days "felt", pain-wise. I mean, it wasn't rheumatoid arthritis, was it? That was the only other thing it could have been. I went in, armed with my printed-up information (it was about four pages long) and I was ready to confront this Jerk Doctor with the info and dammit, he was going to do something about it!

Imagine my surprise when a young woman came to the doorway in the waiting room and called my name. Turns out, Jerk Boy had graduated and moved on. He didn't bother to tell me- like all the other VA doctors I've ever had- he just left. (I know I wasn't his only patient to be told the "exercise" thing- one of the lab guys was a patient of his and had the same problem)... so I presented this new doctor with my information. She read through my paragraphs and skimmed the list (which was color-coded!) and she asked: "How do you know it isn't rheumatoid arthritis?"

I told her that the Jerk Doctor told me the test was negative. She looked in my records (which are literally all right there on the computer) and said she couldn't find any test orders for rheumatoid arthritis. So she went back in the records. To Doctor Doogie's test results that were now four years old. Jerk Doctor didn't even test me for RA. He just parroted the older test results to me in order to shut me up. So, the first thing this lovely lady did for me was order a new slew of blood work. She also put a referral in for me to see the rheumatology clinic (because in the VA, they're in charge of fibro too, and if it was fibro or RA, I'd be sent there anyway). AND- she said she'd get me a referral letter to see an off-site podiatrist about the plantar faciitis. And the fibro... she said: "If it walks like a duck, talks like a duck, sometimes it's a duck."

Now... don't get too happy yet. As is the norm at the VA, the young doctor leaves the room to get some things approved by the attending. Then they come back into the exam room and tell you things about the prescription or whatnot they've just discussed with the attending. She walked back in the room and handed me the referral letter to the podiatrist. She handed the letter to me. The same letter that took six weeks to be mailed to me was literally handed to me. Which means that the six week wait was just another way Jerk Doctor was jerking me around.

Shortly after my diagnosis, I started this blog so I could whine and bitch and laugh my way through this stupid disease.

So, my advice to you is to keep trying. If you get a doctor who shoots you down- get a new doctor. (I didn't know I could do that at the VA. I thought it was like the Army- you get who you get and that's that). Keep asking, keep pressing. Take notes if you have to... because you need to be pushy to get results. This disease is real and it sucks. And you need to keep going.

And now, I leave you with some of my favorite photos from my favorite Mother's Day since the
Great Camera Cryout of 2012. (which, by the way, made THIS Mother's Day possible). Also- a shaky video of the Bristol Pirates actually working the rigging for the sails.

Captain Sir Martin Frobisher and Captain Grace O'Malley search for the train.



O'Malley delights in antagonizing Frobisher.



The Pirates search for transportation. (with John T. Hawser- we found him at that bus stop!)



And they meet some heroes of the Chicago Fire Department (the bus stop was next to a stoplight).



Frobisher "discovers" O'Malley.



I told Captain Hawkyns to look at me and this is what he did-



He's not even posing. He was just standing there, listening to instructions on how to raise the sails.



Sir Francis Drake and "Marvin Frobisher".



Sailor size comparisons.



Anne-Drew, Frobisher's Ship's "boy".



Sir Francis Drake loves life.



Frobisher and Anne-Drew.



Martin can't take Marvin anywhere.

"LOOK, Cousin Martin! Do you see it!?"

"Yes, Marvin, it's called 'the ocean' and it's all around us."



This is Cassy, but I don't know her character name.



Maeve O'Malley (Grace O'Malley's daughter- the character, not Tabitha)

Nine days, all hope of rescue is lost...

I just ordered pizza for dinner because the very thought of standing up to cook makes me want to cry. Standing up to answer the door is so much easier than standing in the kitchen to cook. And sadly, I'm out of the frozen-throw-in-the-oven food that I usually have on hand. It is only slightly better for me than the pizza with extra pepperoni I just ordered.

On top of the wonderful pain I've been having every single day for the last nine days, the fatigue has finally decided to kick me in the face. Up till now, it was only playing catch with me and wasn't a huge problem. But today... today I am exhausted. I stood up at 2 PM to make sauce for spaghetti later. When I became vertical, my body instantly wilted, like a sad daisy. Why is the daisy sad? Because gravity sucks, that's why. I sat back down and stared blankly at my computer monitor. At 3 PM, I stood up again and then sat down again. The daisy was even sadder then. At 4 PM, the daisy decided to order pizza and then somehow, waited another hour to get that done. (all of this happens with random moments of having to take the dogs out and having to "take myself out", if you know what I mean, and no, don't think about it. Sorry, I made you think about it).

Part of today's exhaustion is linked to yesterday, I'm sure. I did some photos at a charity event in Janesville. It was windy, but not too cold when I left my house. I was wearing a cardigan (because I'm old) and it proved to not be warm enough at my destination. I should have worn a hoodie (because I'm not that old). Here's a link to the photos on my Facebook page. The cold definitely settled into my body like it owned the place. This morning wasn't so rough, I thought maybe I'd shaken this stupid flareup spell. But, upon my feet hitting the floor, I realized that alas, it was not over.

I found today, though, that I could reach some relief by sitting on the loveseat, almost completely immobile. If I moved any body part, though, the pain shot through said body part as a special reminder as to why Chronic Illness is stupid and needs to stop being stupid. I'm not getting semi-horizontal on the loveseat right now so I'll be able to get to my feet when my pizza arrives. (which is in about 40 minutes, according to the countdown clock on the website I have opened in another tab). After I go into a pizza coma, I will semi-horizontal myself and watch the animation lineup on FOX. A little dessert with my favorite nerd and maybe I'll be good enough to get up to go to bed. Yeah... bed... but first, food and nerdery.

Because I mentioned taking those photos at Lake Michigan in my last post, here's a few shots for those of you who aren't on my Facebook profile to get sick of them.
(if you click on the first photo, you'll end up at my Flickr where the rest of those photos are located).

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...

What happens when you get ALL THE SPOONS!

"Spoons? What the hell are you talking about, crazy lady?" says you, in a really snotty tone. I mean, really, we're one sentence in and you're already sighing and rolling your eyes. Aw, c'mon... there's going to be photos related to this down below. And maybe some illustrations!

You'll love the illustrations! I'm so talented.

Not at illustrating, just in general.

First, let me link you over to The Spoon Theory by Christine Miserandino. Go on, go over there and read it. I'll wait here...

Hey, while they're over there reading the article, I'll just talk about the gist of it- you see, the "spoon theory" uses regular old spoons to demonstrate how people with chronic illnesses get through their days. You start out the day with X-number of spoons. Each task takes a spoon from you. Some days, you have a HUNDRED SPOONS and you never run out! Some days, you have no spoons and those days suck ever-so-hard (and not in the good way, know what I'm sayin'?). Some days, you have four spoons and the very act of getting out of bed takes a spoon. Walking down the stairs takes a spoon. Getting your breakfast takes a spoon. And you're down to one spoon and you haven't even gotten dressed yet. And guess what? Those hundred spoons you had the other day? Yeah, you don't get to keep those. They don't carry over like those rollover minutes on your outdated mobile phone plan.

What's all this got to do with me? Well, I'll tell you...

Welcome back, guys. Did you enjoy that article? I hope so. It made me cry the first time I read it. But then, yesterday, I cried during "Independence Day", so don't listen to me about things that make me cry. (it was the Russell Case scene when he says: "Do me a favor... tell my kids I love 'em..." and BAM! TEARS!).

For the record, crying takes a spoon.

But back to today! TODAY!

I was going to illustrate today's stuff in a series of photos. But, I ran out of spoons before I got to the photo part. I had to go to the store and that took all the spoons I thought I had.

So, let's get started.

Today, I woke up having a pain flareup. I struggled to sit up on the edge of my bed. It took two tries to turn off my alarm. I use my mobile phone as my alarm clock. And the alarm that wakes me up first is a song by Steam Powered Giraffe. Hey, I like to wake up to a smile and SPG makes me smile. Especially that song.

This is a recreation of the event. I wake up early, before the sun is up. And when I got the idea for this blog, it was well into the daytime and I didn't feel like recreating it with a photo. Hence this lovely illustration. We have a reasonable facsimile of my room. A window with a dream catcher, me sitting on the edge with my red mobile phone. A lump in the bed representing the Disabled Guy.




I was rested, which is shocking, but I was in agony. All-over aching pain. I felt like I'd been thrown down a flight of stairs and stepped on. So, when I finally made it down the stairs- getting up and walking to the bathroom- one spoon and Putting on a T-shirt and yoga pants- one spoon (I sleep naked. Yeah, I'm naked in that illustration. How about that, Internet?)... Where was I?

Oh, yes... when I finally got downstairs- which took about ten minutes- I did my morning usual: took my thyroid pill, and 20 minutes later, took my morning muscle relaxer. But today, I had a Vicodin chaser with that. About 45 minutes later, I got up to go take the rest of my stay-alive medicine (some asthma stuff, a couple water pills, a blood pressure pill, and some vitamins the doctor told me to take) and to get my breakfast (I had Raisin Bran). I felt good. I felt really good! The muscle relaxer and Vicodin cocktail on an empty stomach worked!

YES!

I HAVE ALL THE SPOONS!

Normally, on a flareup day, I end up going back to bed after breakfast. Sometimes I sleep, sometimes I don't. Okay, most of the time, I sleep. But today? No way, man. I didn't need to sleep! Instead of stripping down and crawling back under my two fleece blankets, I stayed up. I took a shower.

I HAD ALL THE SPOONS!

*photographic evidence of ALL THE SPOONS*



"Wait a minute," you say, "Is that a whisk?"

Yes, that's a whisk.

"I think I see a ladle." you tell me.

You do.

"And a spork. Is that a spork?"

Yes, it is. You see, when it comes to having ALL THE SPOONS, we don't discriminate. WE HAVE ALL THE SPOONS! AND A WHISK! AND A LADLE AND BY GOD, WE HAVE A SPORK!

So, imagine my disappointment when, during my morning routine of blowdrying my hair and getting dressed, my spoons were being rapidly depleted. I don't know what happened. A task that was supposed to take one spoon was taking two. And I might have dropped one. All I know is that the spoons were gone by the time I had to drag myself to the store.

All the spoons...



And I no longer held them in my hand. No, they were gone. Sure, they look like they're on that table, but they're not. What happened to the spork? I have no idea. Even when I came inside, the spork was gone.

Instead of having ALL THE SPOONS, I was now being crushed by the spoons.

*artist rendering*



By the time I was done dragging myself around, I decided to do the photos. And halfway through the two photos, I said: "To hell with this standing and moving thing, I'm going to draw some stuff in Paint."

And that brings us to now.

Today's spoons were an illusion. They were held up to me and I was toyed with and still managed to get to the store and I made chicken casserole for dinner. Because comfort food, goddammit.

When you think you have ALL THE SPOONS, make sure you do. And if your spoons are rudely taken from you as mine were today- don't mentally obligate yourself into doing tasks that take energy. Stick figures in Paint are just as good- IF NOT BETTER- than photographs.

Also, I made today's chicken casserole with fresh chicken. It really wasn't any extra work than using canned chicken. I suggest you give it a shot if you haven't already.

The worst part of losing today's spoons? I didn't have the energy to bake the cheesecake I was going to bake.

Dammit. DAMN YOU, SPOONS!

Let's talk about Closing Weekend, okay?

Here we are, just over a week after our three-day closing weekend at Bristol. I've still got callouses on the arches of my feet (yes, on the arches!). And I'm still struggling with random bouts of fatigue. (and that fatigue may or may not be related to closing weekend, I mean, it has been over a week now).

But let's talk about closing weekend... Why? Because that's what I put in the title, we have to do it now. People are expecting it.

Saturday morning, I awoke to some mild all-over ache-y-ness. Sort of a pre-flu feeling. You know it well- the muscles are sore and tender to the touch. You feel hot, but when you actually touch your skin, you feel cool. No problem. I just moved a little slower than normal on Saturday. I got home and was exhausted from the day- expected, but I was so exhausted that I fell asleep without issue. If only I could have stayed asleep.

Sunday morning, my body screamed me awake with muscle pain and my right hip grinding in such an un-sexy way. I struggled to stay awake for the hour and fifteen minute drive to Bristol from my house. I dragged myself through Sunday, taking my Vicodin on a schedule. I remember moving slow, walking slow, not rushing around.

Monday morning greeted me with a full-blown flareup. I could barely move. I forced myself to my feet. I winced my way through my shower. My joints felt like they were on fire (even the cyborg joint). At the last minute, I opted to wear my thick-soled hiking boots (my favorite pair of Dr Martens). At first, my body was all: "Yo, bitch, watchoo doin? You expect me to drag all this extra weight on my feet?" But after a few minutes of walking on the Bristol dust and gravel ground, my body was all: "Well, my dearest, you are such a clever little thing..." because my body changes its vernacular when it shouts at me.

I moved slow through most of Monday. I chose my photo vantage points for the joust based on how far I had to walk to get over to the area. (and in one case, someone else stood where I was going to stand before I was able to get up and walk over). By the time the closing time came, I was running on auto-pilot. I barely hugged anyone, I barely said my farewells. So, basically, I owe everyone a hug. (you hear that, everyone? You have to come back now!).

I went through the entire closing weekend in varying degrees of flareup pain. And this past week- which one would think would be a week of recovery- hasn't been much better. The weather has been playing with my body like a cat with a housefly. It pulled my wings off and now its just batting me around on the floor. And this floor really needs to be vacuumed. This week's hot-spot is my lower back and right hip. So every step is a delicious reminder of how much this stupid disease sucks.

As I sit here, in my central-air-conditioned house (and the weather outside is in the 90s for heat), all my muscles are stiff and sore. I took Vicodin to go to the grocery store today, so my lower back isn't quite so bad right now. Just don't ask me to turn my head with any kind of speed. Much like closing day, I'm moving in slow-motion today. And unlike closing day, I'm not having any fun doing it.

And, if you'd like to see my faire photos- I have a lot of them uploaded here on Flickr. And that's about 1/3 the amount I shared on Facebook. And as of this typing, I still have one day's worth to upload on Flickr. (I'll be getting to that on Wednesday- which is tomorrow, and it won't be till the afternoon because I have a product shoot in the morning).

I never know how to answer this question...

"How are you?"

You would think that would be easy to answer. But, I have to go through a quick list in my head before I bark out my reply.

Does this person know me?

Does this person know me well enough to know I have fibro?

Does this person even  care that I have fibro?

If this person knows I have fibro, are they asking me how I am politely or are they concerned about my fibro?

The other day, I had to go with the Disabled Guy to Home Depot because he was picking out paint. I didn't want to go, but I also didn't want seventeen phone calls in a row of him asking me various paint colors that all had ridiculous names and didn't look anything like their names would indicate. And we were a few miles from home when I realized I didn't take any Vicodin before we left the house.

Does he care? Not really. (he doesn't even ask me how I'm doing or feeling).

So, let's talk about my pain...

I am in pain every single day. Every day. No matter what. And I would rank that everyday pain at around a three or a four. I can tolerate it. I don't always need to take something in the daytime (other than my one single muscle relaxer in the morning- which is prescribed for me in that dose- one 10mg tablet in the AM, two 10mg tablets at night).

Now, this isn't going to be as easy as "the pain is [this number] on the pain scale" because even a good day can turn bad even if my pain levels don't increase. I might swell up. My skin might start to itch. I might have a hot-spot flareup. The fatigue might set in and drag me to the floor.

When I refer to "having a flareup", I actually mean that my pain is so bad that I must take something in the daytime. Pain. Extreme pain. Pain so bad that air brushing by my skin hurts. If something touches me, it sends electrical jolts of pain in a shock wave from the part of my body that got touched.

When I refer to "my skin itching", I actually mean that I feel like my tendons and muscles are trying to escape through my pores. The itching is under the skin, as if my muscles are on fire under the surface. Scratching doesn't help- it actually hurts. Sometimes rubbing the skin with the flat of my hand helps, but who can do that ALL OVER THEIR BODY? Not me.

Some days, the only solution is nudity and two fleece blankets. I'm not telling you anything you haven't read before. But I just wanted to discuss my pain... Mostly because I've had more flareups this year than I have since they started treating me for fibro.

I suppose the good news is, that despite having pain issues at the faire, I haven't had a meltdown like I did last year.  We've got two weekends left in this season. It has gone by way too fast again. Except for Fridays, which crawl by at a snail's pace.

But, to answer the question: "How are you?"... well, that depends on a few things. But let me tell you this- no matter what I answer (which is almost always: "Fine"), I am in pain. I am in enough pain that normal people would cringe. I am always in pain. Always. If I'm standing up, sitting down, or if you somehow end up in my bedroom and I'm in bed under two fleece blankets and my clothes are not on my body... I am in pain.

Despite that pain, I still take awesome photos. Because I can. Because that's what I do. Because I love to take photos. And I love my subjects (people and animals)... Because when I take photos, I feel like I'm contributing to something. Because when I take photos, I can forget how much my body hurts for those few minutes. But mostly, I just love doing it.