Wednesday, June 26, 2013

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).


My favorite shot of that day

This was the droplet that I saw something moving inside

Sunrise, dewdrops, and pollen

Early morning raindrop macros

Early morning raindrop macros

The sun in the raindrop

Sunlight and raindrops

I love how the leaves turned out inside the raindrop

Bleeding heart

Raindrops and leaves


Thursday, June 20, 2013

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.

Tuesday, June 18, 2013

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.