Apparently, I forgot how this disease works...

Saturday at Bristol, I did a lot of painting. A little bit of lifting of painted things, but for the most part, I painted. And Sunday, I painted more. On Sunday morning, though, before I was even dressed, I tripped on my stairs and banged my forearm against a corner on the wall.

Why am I telling you all this?

Because Sunday I could feel things starting to drag me down. By the end of the day, I felt like a giant sloth. Sloooowly dragging my body across the road. Gravity pulling me down to the ground and then poking me with a sharp stick. Monday was downright miserable. Tuesday even worse. I'm in agony. I feel exhausted and everything hurts. I feel like the pain is radiating from my feet and then spreading through my body. By the time it gets to my head, the pain has changed into mind-numbing exhaustion.

Monday, I kept wondering what I had done to myself to cause all this pain. I mean, I painted. That's all I did. I wasn't hauling heavy things around. I wasn't walking the entire length of the faire multiple times. I was sitting on my ass, painting benches and other such wooden things. I tripped and banged my arm, but surely that can't be what's causing all this pain.

Today, I took the dogs out and I was leaning against the railing on the deck. Let's go... I'm tired... I have to take a shower and get my day started (we're going back to Bristol today, to help in the garden again). And I suddenly remembered... This disease does this. How in the hell could I forget that this disease makes its own flareups? I mean, really. REALLY.

I've been officially diagnosed for the last three years. I've dealt with symptoms for at least eight years. And I stupidly allow myself to fall into a false sense of security when I have a slew of good days.

I'm in a full-on flareup and I feel terrible. But,  I'll have a steady flow of Vicodin in my blood today and that's cool.  And, I get to go to Bristol today and I'll see some people I don't get to see except for at Bristol and that's cool.  And if I keep this steady flow of Vicodin in my blood today, there will be a lot more things that I think are cool. And that's cool. (also, don't worry, I'm not driving to Bristol. The Disabled Guy is... and that's cool).

I had to go and open my big mouth...

All that flareup pain I said I'd missed out on the last couple weeks?  Yeah, it came back. Somewhere around one PM today, my body just said: "Fuck this feeling good shit" and the pain set in. I was at the grocery store when I felt it coming on. And I still had to get through the grocery store. One good thing about it, I was hungry when I went to the store (I had cereal for breakfast at 4 AM and a banana for lunch around noon), but as the pain started to settle into my muscles, I sort of lost my appetite and passed up the snack foods I was considering putting in the cart only a few moments before.

On top of the pain, we have the itching again. I say "we" because you're in this with me, right? I mean, all this pain can't be for just one person, can it?

Right now, the majority of the pain is in my arms/hands. I feel like my elbows are trying to separate from my body and the muscles between my elbows and wrists are trying to pull tighter to keep the elbows from leaving. And the itching is mostly in my hands, between the burning aching in my knuckles and stabbing jolts of pain in my hands.

And, of course, the same sprained feeling is in my left foot and ankle. And my left hip. My "hot spots". And there is a general all-over pain right now too, but the intensity of the hands/arms/hot-spots is higher than the all-over stuff.

There's an article or few going around about a breakthrough in how doctors have perceived fibro. I've read three or four versions of it (because people have posted it on my Facebook and I follow a few fibro support pages on FB). I won't bore you with the details, but here's a link if you want to read it. I'm just going to sit back and peel the skin from my arms and hands with a vegetable peeler while I await the new and amazing treatment that will take this imaginary disease away from me. That should totally work, right?

Right now though, I really wish I'd gotten some of that snack food.

I can hear Mother Nature laughing maniacally right now...

We've had the most screwed up weather this year. We went pretty much from Winter to Summer with only a blip of Spring in between. I had our heat on one day, only to have to flip it to the AC the next. Not an exaggeration. And the rain. So much rain. Right now, my Weather-dot-com page has seven, yes, seven flood warnings. We're safe, so don't worry about that. We live uphill from the river and if it gets so high it reaches us, we'd already be on the ark.

Shockingly, in the past week or two, the near-constant rain and thunderstorms haven't caused me to be in agony. In fact, I haven't "felt" a storm coming in all that time. Normally, a weather front will bring a flareup with it, causing me to whine and awkwardly twitch and outwardly bitch about it. Don't get me wrong, I still have the muscle pain and stiffness. After sitting still for longer than a few minutes, I'm so stiff I can barely move. And I have those hot spots (right now, left hip, left ankle, left foot). And if I try to lift anything, I have that sharp, lactic-acid-like pain in whatever muscle I'm exerting.

That sounds terrible. But it isn't, really. I can function like that and usually I can function like that without the benefit of daytime pain meds. One thing that the ever-changing weather has done for me is keep me utterly exhausted. The fatigue that comes along with fibrofuckingmyalgia is almost zombie-fying. Add to the top of the mind-numbing exhaustion the dogs who are terrified of thunderstorms. The last three nights, Gypsy the German Shepherd who will eat your face has been so freaked out, she pulls the gate down and comes upstairs. She braves the cats to get to my bedroom. Yes, its true. Gypsy will eat a person's face if she perceives them as an intruder and that very same dog is terrified of the cats. Keep your giggling to a minimum, she's sensitive about it.

So, for the last three nights, I've been awakened at various times by a terrified German Shepherd strong-arming (strong-pawing?) a well-set, metal-barred gate to get upstairs. The Chis are afraid of thunder too, but they're also more afraid of the cats than Gypsy. You would be too if the cats were bigger than you. Let's turn you loose in the savanna and see how thrilled you are when a tiger decides you look delicious. Yeah, now you feel bad for laughing at them, don't you? (don't... I laugh at them too).

While it seems I've gotten a respite in the flareup side of things, Mother Nature has given me the zombie exhaustion. And... the itching skin. And this itching isn't just that "millions of hairy-legged tiny spiders trying to breakdance out of my body through my skin" feeling. No, this millions of hairy-legged, breakdancing spiders are also on fire. My skin feels hot to me, but when I actually touch it with my hand, it feels normal.

Since the dogs woke me up at 3 AM today, I'm going back to bed for a nap. (and it isn't even 6 AM here yet!).

One thing that Mother Nature's menopausal mood swings have brought is macro raindrop photos. Enjoy. I know I enjoyed the momentary distraction from the fibro to shoot them. (there are more, if you click the photo, it'll take you to my Flickr where most of my photos are).

Let Grammy Patty get her ear horn out...

Oh, yeah, my name is Patty. Nobody calls me Pahz in a real-world situation. I use "Pahz" because I do photography ("No way!" you say. "I KNOW!" I exclaim back) and there are a *kajillion "Patty Smith Photography" places out there. "Pahz" is the phonetic pronounciation of my initals, and I used to sign my artwork with my initials, back in the day when I did artwork.
*kajillion is an estimate

I had my doctor appointment today. A few good things- despite having flareups, we're not touching the fibro treatment for now because on the whole (*snicker*) it is working. And I'm not losing weight, but my jeans are becoming ridiculously loose on me. The doc says I'm probably gaining muscle. When I had my knee replacement, as you all know, the recovery was delayed by the then-undiagnosed fibro and I lost a lot of muscle tone in my legs- mostly my thigh muscles (all of them, choose one). All my blood work is good. My bad cholesterol had been about five points into the "time to treat with a drug" area, but the doctor gave me six months to get it down on my own. Guess what? Cheerios. Those dry, disgusting, dusty little circles actually DO help. (I don't like Cheerios. I'm more of a Cocoa Puffs gal).

Now, about my hearing. Well, I'm going deaf. And that sucks, because I was born halfway there. The doctor checked out both my ears and they were not only the cleanest she'd seen (I'm crazy-careful about that), there was also no fluid or any signs of infection. Then she did some weird stuff to me with a tuning fork,  which was kind of cool because she did it to my deaf ear too. And of course, there was nothing going on on that side of my head. While she was inspecting my ears with the ear-light-scope thing, I asked how everything looked and she said: "Fine. There's nothing going on inside here..." So, basically, my doctor said there's nothing going on inside my head. LAUGH, GODDAMMIT! I did!

So, she's put in the referral to the Audiology clinic at the VA hospital. One of two things will happen now. I'll get a letter in the mail telling me that they won't do that for me at the VA hospital. There is a list of services that the VA hospital won't cover and it changes every so often. If that happens, the letter explaining it will include the official referral letter for me to take to a non-VA audiologist. That means my insurance will cover it, but we'll have to pay for the first $100 (deductible) and 20% of every cost after that (cost share of patient)... which sucks, because we live on a fixed income and my photography doesn't pay regularly enough for us to count on it.

The other thing that could happen will be that in three months, I'll get a call saying there's an opening on X-day at Y-time and could I get there for that? Of course, I'll go, but I really think it'll be the first scenario.

I told the doctor: "Well, if that happens, then I won't be getting seen by an audiologist." of the second and much shorter scenario.

She sort of made a scoff noise and said: "But you have to. You have to, this is really important. You have to find a way to make it happen if you have to do it that way."

So, soon I'm going to call my dad and say: "Hey, Dad, can you come with me to a doctor appointment [one town over]? Oh, and bring your checkbook..."

I'm kidding... I'm going to call him tomorrow and let him know how my appointment went today. Why tomorrow? Because I'm listening to music right now. I'm listening to it while I can. Reality can bite me for at least one more day.

What? WHAT?! I CAN'T HEAR YOU... no, really, I can't...

Let me throw this out there first- I've had pretty good days in the last couple of weeks. No agonizing pain, really. I've been mostly functioning at a six on the pain scale. We've been going to the ren faire the last few weekends to work in the Friends of Faire Garden (and by "we", I mean me and Christine and by "work", I mean Christine works and I sort of push a paintbrush around). I finish those days sore and the next mornings are always a bit rough, but nothing too terrible.

But now on to the title topic. You see, I was born deaf in one ear. They discovered it when I was four years old in one of those hearing tests the school nurse gives you. Raise your hand if you hear the beep. Right hand for the right side, left for the left, and both for... well, you know. After several tests- many of which were terrifying to me- the Army doctors determined that I was born without the auditory nerve that runs from the eardrum to the brain.

About those terrifying tests- I was four years old. They locked me in a dimly-lit soundproof room and put giant, padded headphones on me. And I couldn't see my mom. Then a stranger would say in a monotonic tone: "We're going to play some sounds... you tell us what you're hearing..." Then they proceeded to play thunderstorm sounds and ocean sounds and various other scary-to-a-small-child noises. Then the monotonic voice would say: "I'm going to say some words. Repeat those words back to me..." I was four years old. I could barely speak on my own, much less repeat multi-syllable words to an invisible stranger while worrying that my mother had abandoned me.

At one point, the monotonic voice told me I didn't have to cry. Then my mother opened that heavy soundproof door and took the headphones off me...

Okay, we've gotten a bit off track.

Along with the born-deaf thing, I've had some hearing loss in my good ear. I've been careful. I've only ever been to five concerts in my life. When I listen to headphones, I keep the volume low enough to hear outside noises and I don't use earbuds. As I got older, I developed tinnitus. And that low-grade buzzing comes and goes. Well, it never really goes, it just seems quieter and sometimes it seems louder. But it always goes back to the quieter... almost always.

A few weeks ago, my ear started to buzz louder. After several days, the buzzing seemed to taper off, but everything seems like it has been turned down. I have to turn the TV up louder, I have to turn my computer speakers up. I can't even hear the sound my truck engine makes unless I'm in an enclosed area (like a parking garage or whatever).

After two weeks, like anyone with chronic issues, I looked it up online. There are a few scenarios. One is that I have fluid in my ear and I'll be fine. Another is that my tinnitus is just getting worse. And another is that the tinnitus is being exacerbated by fibrofuckingmyalgia (is there any gift that gives you as much as fibro does?). And the last one is that I am losing my hearing. My tinnitus isn't getting worse, I'm just not hearing the world anymore and my brain focuses on the ringing in my ears. Well, ear, since the other one has never worked.

I have a doctor appointment on Thursday where they'll do a few things to see what's going on with my hearing. So, if you see me at Bristol (well, if you see me anywhere, actually) and I don't answer you, I'm not being rude, I sincerely cannot hear you. I can't ear anything on my right side (all my life) and I can't hear things behind me (all my life), and now... well, its a gamble if I can hear you or not.

If you feel the need to get my attention, it helps to call out my first and last names. And if you know me at Bristol, you know my full name. If you're standing next to me and you spot a hot guy (which happens A LOT at the faire) and you want to whisper it to me, you have to whisper like you were raised in a sawmill and do it on my left side. But if you're sawmill-whispering to me that there's a hot guy at my 3 o'clock, odds are, he's going to hear you too, so I hope you're not prone to blushing. Because if he looks over at us, I'll take his photo and he'll know it was you who said something. Because I'll tell him.

Jokes aside, I haven't been this scared since the doctor found a "suspicious dark area" in my mammogram. That turned out to be nothing.

And now, since I like to end things on a high note, let's all watch The Spine from Steam Powered Giraffe do a cover of a Rhianna song.

The Exhaustion. It's so tiring.

This is gonna be a short blog post. Stop cheering, I can hear you all the way over here. If you keep it up, I can keep typing. You know me...

Let me dive right into it. Mostly because I'm so bloody tired. The Exhaustion... how bad is that feeling of tired? "Tired" is a nice way of putting it. Along with the fatigue is a little pain, but the pain is negligible by comparison. 

This was my morning- I got up after turning off four alarms. (I use my mobile phone as my alarm clock and I have four alarms set in a 35 minute window). I got up, staggered to the bathroom to put on my ha-ha-workout-clothes. I managed to get downstairs without falling down and I took the first of my stay-alive pills. 

I normally wait at least a half hour between my thyroid pill and my other stay-alive pills because I was told once a million years ago that I should take it on an empty stomach. But today, I got up after ten minutes and took the rest of my stay-alive pills (three of them are vitamins, the others are for my blood pressure, allergies/asthma, and acid reflux). Then I opened the cabinet to get my breakfast. Cheerios. Because gross stuff is good for you (not a fan of Cheerios). 

But the very act of pouring a bowl of cereal, getting the milk for it, walking back to my desk and then actually eating the cereal seemed too daunting a task. I usually keep some Special K cereal bars on hand for such days, but I was out. 

I had Frosted Cherry Pop Tarts for breakfast. I had Pop tarts for breakfast because cereal was too hard. I ate almost all of the two tarts and gave about a third of the second one to my dog- Gypsy. I took the dogs out- I think they love the fatigue days because I tend to stand on the deck without constantly telling them to hurry up. If I don't remind them what they're out there to do, they'd just run in circles eating grass and playing till they fall over. After I got them back inside, I went back to bed for a nap. 

I was up for less than 45 minutes before I succumbed to the fatigue. The exhaustion is worse than the pain sometimes. I mean, the pain sucks, don't get me wrong (today's pain, in case you were wondering, is about a five or six), but I can deal with the pain. I can't always stay in bed and nap. Also, I can take pain meds if I have to, but increasing my caffeine intake helps not at all for the crushing exhaustion. 

Consider yourself lucky if you don't have this disease. You know how you get tired at the office or in front of a class or digging that ditch (I don't know what you do for a living)? You yawn and stretch, let out a little groan, maybe stand up and walk around your office... or ditch. You feel a little better and you feel like you can go on. I can't do that. When I stretch, it hurts. Yawning sucks in general because it doesn't help (and I keep doing it now because I keep typing the word "yawn"). And if I get up when I'm this worn down, I'm going to shuffle-walk my ass to bed. 

Well, look at that... this wasn't as short as I expected. I told you to stop cheering about that, but you didn't listen, did you? Yeah, go think about what you've done. 

The new flare-up from Hell. They can't ALL be from Hell, can they?

I started having this flare-up on Monday. At first, it wasn't an issue, because I figured it was Faire Weekend spill-over. I always hurt the Monday after a faire weekend. But, as the day went on, the pain got worse and worse instead of better. Tuesday wasn't terrible, but I felt awful. Just that all-over achy feeling, sort of like the pre-flu. Wednesday sucked. I took pain meds all day. And on all those days, I had to take a nap in the morning. I had no choice. It was either "go take a nap for an hour" or "fall down on the floor and be smothered in Chis" (say that out loud).

Then we have today. I woke up in agony. And I mean agony. I had pain all over my body. From my toes to my head and just about everything in between. I couldn't even walk. I had to shuffle. The only way to describe that astounding amount of pain is to liken it to a sprained ankle... if that sprained ankle pain is ALL OVER YOUR BODY. It was an intense, constant pain. Every step shot a jolt of pain through my legs. My ankles felt like I had actually sprained them (I haven't, by the way. And they STILL feel like that now, late in the evening).

I couldn't take daytime Vicodin though. I had to run some errands and go to the grocery store. I hate the whole upright, living, doing, clothing thing on flareup days. My skin didn't just itch today, it felt like I was on fire. My skin still feels hot, almost like I have a fever, but its only a fever I can feel. If you were to touch my skin- that is, if I let you close enough to me to try and lay even the gentlest finger on my body- it would feel normal. I'm not sweaty, I'm not actually feverish. And as if that wasn't fun enough, the itching is doing that thing. Those hairy-legged spiders are trying to escape through my pores again.

When I got home from my errands, I just sat down at my desk. Within an hour, my body decided that my super-soft sweater was sandpaper and that my jeans were designed by the same guy who created wool blankets for the US Army. The neuropathy in my feet decided that my shoes were made of bear traps. I went upstairs and crawled into bed, leaving my clothes in a random pile near my dresser. I wasn't tired, I just needed to go starfish and even out the pain or the gravitational pull. I did end up taking a short nap, though. Not on purpose, it just happened.

I'm a few hours into my pain meds and my body finally feels a little better. The agonizing edge has been dialed back a little. Now instead of "agonizing", the pain is closer to "terrible". The itching level is at "insanity" and the fire-skin has cooled to a Girl-Scout level as opposed to "arsonist".

Tomorrow, I have to take it easy. On Saturday, I'm doing a charity photo shoot as the second photographer and since its a charity for a woman's self-confidence, I'm taking part in it. (The Traveling Red Dress- my daughters, four years apart in school, both had red prom dresses and they're going to donate those dresses to the cause. Oh, and they'll be at the photo shoot too). But if I expect to function on Saturday, I have to take it easy tomorrow.

I could do without the sprained-ankle feeling in my ankles. The thing about that pain is that it doesn't hurt if I'm not standing or moving my ankles. Right now, I'm in that proper typing position- sitting up straight, wrists resting on the padded thingy for my keyboard, and I have one foot placed slightly ahead of the other, flat on the floor. My ankles do not hurt. But if I go to flex my ankle or rotate it (one of the moves for reducing swelling in the legs), it screams in agony like I actually sprained it.

There's a comedian (Greg Behrendt, actually) who jokes about hurting oneself while one sleeps. Of course, his version is a lot funnier than mine. What do you expect? He's a comedian. I'm a fat housewife with fibrofuckingmyalgia and an obsession with renaissance faires and photography. (speaking of renaissance faires, we're 44 days from OPEN WIDE THE GATES!).

Part of my errands today was that I had to get my dad's mail (he's out of town again). While there, I weighed myself on his scale (I don't have one, he has a fancy one from the doctor that does everything but point and laugh at you). I haven't lost any weight, pounds-wise, but my clothing feels looser. I don't know why, but I wanted to mention it in case I fall into a sinkhole or something. "Well, Patty didn't stop-up that sinkhole like we expected... has she lost weight?"  No, apparently not.

Today felt worse than any of the other days that I've complained about through this blog. The pain was exacerbated by the fact I couldn't take any pain meds. I went through the grocery store almost on autopilot. There were a few times that I slowed down so much that I had to tell myself to keep moving. "If you fall down here, it will be embarrassing and they'll probably call an ambulance and you can't afford that. Plus, you have dairy in your cart. It'll go bad if you fall down here..."

I rationalize with myself. But I really did just want to stop walking and let gravity have her dirty way with me. She's pulling down on me awfully hard, she must want me closer to the ground. That's the only thing that makes sense.

I have no idea if gravity is a dude or a chick. Either way, Gravity is a bitch.

Here's hoping that I feel good enough to enjoy Saturday. My part of the red dress thing is that I'm wearing a skirt that I've never worn in public. And it shows my legs. I haven't shown my legs in a skirt since before 2004. How do I know that? Because in December of 2004, I started having issues with edema. My legs still swell up. Sometimes quite bad, sometimes not at all. I'm going to wear that red skirt with a red shirt and I'm going to rock it as hard as I can.

Right now, my only issue is footwear. Because of the pain and edema, I can't wear sandals. All I have are different styles of Doc Martens boots.

One good thing happened today. I unintentionally had a "Fro Knows Photo" theme going on with my 365s this week. Monday, I was wearing my favorite "I shoot RAW" T-shirt.  Tuesday, I put on my new "I shoot RAW" hoodie (Mother's Day gift to myself) for the photo. Wednesday, I was wearing my "FroNation" T-shirt (I have seven "I shoot RAW" shirts and the FroNation shirt as well as the new hoodie).  As I started my drag-shuffle to go lay down, I remembered I hadn't done my 365. So, I picked up my camera and grabbed my "I shoot RAW" bracelets (they come with the special deal orders. I gave one away this weekend). And since I was laying all starfished in bed, naked under the fleece blankets, alternately dying of the fire in my skin and shivering from the chill I got when I uncovered, I got artsy with my 365 and managed to stay within my unintentional Fro Knows Photo theme.




So at least there's that... and my pain meds tonight DID take the edge off my pain. Here's hoping I can get through tomorrow and enjoy Saturday.

Who am I kidding? Pain or no pain, I enjoy taking photos. I just really want to wear my Dr Martens Triumphs instead of the sandals.