I was looking something up related to fibro (pain in the hands, feet, and other "hot spots") and got stuck in an article loop of clicking "related content" on different sites and found this one (on WebMD). Which made me laugh for some reason.
From the article:
"With fibromyalgia, you may feel:
♦ Fatigue on arising in the morning
♦ Fatigue after mild activity such as grocery shopping or cooking dinner
♦ Too fatigued to start a project such as folding clothes or ironing
♦ Too fatigued to exercise
♦ More fatigued after exercise
♦ Too fatigued for sex
♦ Too fatigued to function adequately at work"
So, what WebMD is telling us- most fibro sufferers are TOO FATIGUED TO LIVE. Of course, if we believe the old Coca~Cola ads, extra caffeine is all we need to "relieve fatigue". But, caffeine can exacerbate our fibro symptoms... so we're too fatigued to do anything, but if we drink more caffeine, we're likely to increase our pain levels, causing us to be unable to do those wonderful projects...
Also- I don't classify "folding clothes or ironing" as a "project". A "project" implies that it might be fun or that it involves work and therefore a paycheck. Unless you're a maid or work in the dry cleaning industry, folding and ironing clothes isn't a project. I'd call it a "task" or "something I'm not doing". Yeah, I don't fold laundry. It sort of piles up in the clean basket till I wear it again. And "ironing"- I call that "fifteen minutes in the dryer".
But this list... I was fatigued after reading it. I think I reached the point where "fatigue" almost has no meaning anymore. I'm not "tired". I long for tired. "Tired" means you've had a good, solid day of work and that you're worn out and will sleep well because of it. "Fatigue" means no matter how much sleep you get, you have no energy to do anything. Exhausted, but awake. Awake, wildly awake with a forgetful brain that won't stop racing with thoughts about everything from: "Did I turn on the dishwasher after I managed to load it?" to "I like that Cumberbatch fella too..."
In my clicking, I also found this article about wrist pain. And the part that got me was this: "You may feel aching, burning, numbness, or tingling in your palm, wrist, thumb, or fingers. The thumb muscle can become weak, making it difficult to grasp things. Pain may extend up to your elbow." The thumb muscle can become weak, making it difficult to grasp things.
Or, you know, like in my case- I can pick something up and seconds later, send it skittering across the table or counter-top because I've lost my grip on it. And that doesn't really hurt, not in the sense of the usual pain, anyway. Yesterday, I spent all day picking things up, dropping them, picking them up again, and then accidentally flinging them when my hand decided to lose its grip on them. Yesterday, my wrists were sore like I'd sprained them, but I hadn't. And this morning, I woke up and my wrists were fine. Well, not fine, but they weren't hurting in the middle of the tiny bones like yesterday.
As for the title of this blog post- I WAS too fatigued to finish this post when I started it this morning. And here I am, twelve hours later, finishing it up... why twelve hours?
Because I completely blanked on the fact that I'd started it. I forgot it was here and in need of finishing. So, while I'm absolutely fatigued and can't seem to keep a grasp on anything- I also forget when things need to be fini
Wednesday, January 22, 2014
Saturday, January 18, 2014
The New Normal- NO! This isn't normal!
I read an article- and I don't remember where- about how things become the new normal. When you have a chronic illness, you fight for a while, then it overwhelms you and you accept it. And then, that thing is now "normal" in your life.
I've had to accept a lot of crap as "normal".
Born deaf in one ear. There are so many little things related to this that are difficult to explain. From having to adapt by focusing on people's mouths when they speak, to having a speech for each teacher on the first day of school as to why I had to sit up front. Always Normal.
I started going grey at 17 years old. I eventually started dying my hair every four weeks. I haven't seen my natural hair color in at least ten years. Probably more. Fine. New Normal.
Blood pressure pills every day? Fine. New Normal.
For more than three years in my 30s, walking with a cane was normal.
My feet went bad and I can no longer wear cute, girly shoes like strappy sandals or high-heeled pumps. Fine. New Normal.
Pain in my hands made it almost impossible to hold a pencil (or any drawing/art tool). I had to stop drawing and painting. Fine. I went back to the photography. Normal.
The pain I've dealt with in my feet is so normal to me that I don't remember what it feels like to not have sore feet. And now here we are... another new normal. For weeks now, I've had a terrible pain in my right hip. And it isn't arthritis- I know arthritis pain. It is definitely the fibrofuckingmyalgia. It hurts the most after I've been still for a while. Sitting, standing, in bed- wherever I've been still. Those first few minutes after I move again are agony. An example: this morning, I had to get up from this desk, go take the rest of my stay-alive pills and get breakfast. I cried from my desk to the kitchen from the pain. I tried heat on it and it felt great- till I moved. I tried ice, but that just made me hurt more and in a larger area. Some days are worse than others, just as some days are better than others. But those bad days- those bad days have no business existing.
The bad pain days are bad enough- right? I mean, pain sucks. And pain that pain meds don't even touch is worse. But on top of the shriekingly bad pain, I get more emotional. The stupidest things make me weepy. Things that have no bearing in my life. Commercials. Movies I've watched a dozen times over. Song lyrics. And it doesn't even have to be the whole song- it can be as simple as just a line in a song. (here's an example- this song- "A Way into Your Heart" by Steam Powered Giraffe- kills me every time. And the video even more. The line: "Lately, your love of life has been fading..." rips my heart out. Oh, and if you really want your heart thrown against a wall, listen to "Turn Back the Clock" on that same album).
Where was I before I started crying at that song? Pain, that's right. Always about the pain.
The New Normal has become daily pain meds. I've been having to take pain meds in the morning lately. And at night (as usual). I'm contemplating doing my muscle relaxers the way I did them for faire- three times a day instead of just in the morning and night. Right now, my prescription for the muscle relaxers is one pill in the AM and two in the PM. During faire days, I take one in the AM, one again at noon, and then one at night before bed. Same dose, just spread out evenly.
But I don't want to make that the new normal. I hate the new normal. And there isn't much the doctors can do for me. The weather is a huge trigger for me and aside from living on the space station, there isn't any way to control my atmosphere. Here's our weather for the last several weeks- cloudy daytime, clear as a bell nighttime, snow, clear skies but bitterly sub-zero temps, humid and cold, humid and warm, rain one day, snow the next. We have a snow-blower, which makes things easier in general, but I'm still in agony when I'm done. Usually radiating from that pain in my hip. (right now, my whole body aches from pushing the snow-blower around).
And I hate to say it- but there have been days where I have wanted to go outside and take photos, but I know how I'll feel if I do, so I didn't go outside for photos. That means I let the fibro win. And I hate that. Because if I keep doing that, then it will become the New Normal. But, there have been days where I forced myself to do SOMETHING. I can't miss every opportunity. During that week we were getting -30° Fahrenheit for our high temps of the day, people kept posting links to the frozen bubble photos on my Facebook (18 times in less than a day). I couldn't do it because on top of those bitter cold temps, I had a cold. My first chest cold in YEARS. And since I'm also an asthmatic, I couldn't go outside for long periods of time. When I took the dogs out, I had to cover my mouth and nose with a scarf.
I felt like I was going to rob a stagecoach every time I went outside. There were fifteen days when I didn't take any photos other than my 365days self-portrait. (and some of those were absolutely awesome, because dammit, I needed an outlet!). I did a lot of themes from a group I'm in called "We're Here!".
I'm going to share a few of them as links, just so it doesn't clog everything up with huge photos (like my snow-removal rant two weeks ago).
Day 325- A Nighttime Portrait
Day 331- Binary Red (the theme was "Binary Love", so we had to do something related to binary code). This photo is my most popular photo on Flickr. Ever. In the first 24 hours, it had over 7500 views. This was a last-minute inspiration and it worked out great. As of the typing of this sentence, it was at 10,601 views. I cried when it hit 10,000. Because, you know, emotions and pain. (I'm selling prints of this photo in my Etsy shop)
Day 333- Rockin' Out I put my own twist on the "heavy metal horns".
Day 337- The Doctor Will See You Now The theme for this was "Twisted Flickr" and I am now officially out of red food coloring. And there's a comment on that photo by "Studio d'Xavier" that made me cry. This was also a last-minute inspiration, like "Binary Red" was... and it turned out great too.
Day 338- Setting things on fire Because sometimes, you gotta spin some burning steel wool to feel better.
So, despite being trapped indoors by the weather and fibrofuckingmyalgia and general ennui, I did manage to be creative a little. And also- because I can, here are some random snow-related photos.
And, here's some size reference for how tiny those snowflakes were...
I've also become obsessed with how the birdhouses look with snow falling all around them. I've taken many photos like this one from New Year's Eve.
And here's one from today-
And, a Christmas ornament in the snow (from New Year's Eve)-
And... one from today-
I've had to accept a lot of crap as "normal".
Born deaf in one ear. There are so many little things related to this that are difficult to explain. From having to adapt by focusing on people's mouths when they speak, to having a speech for each teacher on the first day of school as to why I had to sit up front. Always Normal.
I started going grey at 17 years old. I eventually started dying my hair every four weeks. I haven't seen my natural hair color in at least ten years. Probably more. Fine. New Normal.
Blood pressure pills every day? Fine. New Normal.
For more than three years in my 30s, walking with a cane was normal.
My feet went bad and I can no longer wear cute, girly shoes like strappy sandals or high-heeled pumps. Fine. New Normal.
Pain in my hands made it almost impossible to hold a pencil (or any drawing/art tool). I had to stop drawing and painting. Fine. I went back to the photography. Normal.
The pain I've dealt with in my feet is so normal to me that I don't remember what it feels like to not have sore feet. And now here we are... another new normal. For weeks now, I've had a terrible pain in my right hip. And it isn't arthritis- I know arthritis pain. It is definitely the fibrofuckingmyalgia. It hurts the most after I've been still for a while. Sitting, standing, in bed- wherever I've been still. Those first few minutes after I move again are agony. An example: this morning, I had to get up from this desk, go take the rest of my stay-alive pills and get breakfast. I cried from my desk to the kitchen from the pain. I tried heat on it and it felt great- till I moved. I tried ice, but that just made me hurt more and in a larger area. Some days are worse than others, just as some days are better than others. But those bad days- those bad days have no business existing.
The bad pain days are bad enough- right? I mean, pain sucks. And pain that pain meds don't even touch is worse. But on top of the shriekingly bad pain, I get more emotional. The stupidest things make me weepy. Things that have no bearing in my life. Commercials. Movies I've watched a dozen times over. Song lyrics. And it doesn't even have to be the whole song- it can be as simple as just a line in a song. (here's an example- this song- "A Way into Your Heart" by Steam Powered Giraffe- kills me every time. And the video even more. The line: "Lately, your love of life has been fading..." rips my heart out. Oh, and if you really want your heart thrown against a wall, listen to "Turn Back the Clock" on that same album).
Where was I before I started crying at that song? Pain, that's right. Always about the pain.
The New Normal has become daily pain meds. I've been having to take pain meds in the morning lately. And at night (as usual). I'm contemplating doing my muscle relaxers the way I did them for faire- three times a day instead of just in the morning and night. Right now, my prescription for the muscle relaxers is one pill in the AM and two in the PM. During faire days, I take one in the AM, one again at noon, and then one at night before bed. Same dose, just spread out evenly.
But I don't want to make that the new normal. I hate the new normal. And there isn't much the doctors can do for me. The weather is a huge trigger for me and aside from living on the space station, there isn't any way to control my atmosphere. Here's our weather for the last several weeks- cloudy daytime, clear as a bell nighttime, snow, clear skies but bitterly sub-zero temps, humid and cold, humid and warm, rain one day, snow the next. We have a snow-blower, which makes things easier in general, but I'm still in agony when I'm done. Usually radiating from that pain in my hip. (right now, my whole body aches from pushing the snow-blower around).
And I hate to say it- but there have been days where I have wanted to go outside and take photos, but I know how I'll feel if I do, so I didn't go outside for photos. That means I let the fibro win. And I hate that. Because if I keep doing that, then it will become the New Normal. But, there have been days where I forced myself to do SOMETHING. I can't miss every opportunity. During that week we were getting -30° Fahrenheit for our high temps of the day, people kept posting links to the frozen bubble photos on my Facebook (18 times in less than a day). I couldn't do it because on top of those bitter cold temps, I had a cold. My first chest cold in YEARS. And since I'm also an asthmatic, I couldn't go outside for long periods of time. When I took the dogs out, I had to cover my mouth and nose with a scarf.
I felt like I was going to rob a stagecoach every time I went outside. There were fifteen days when I didn't take any photos other than my 365days self-portrait. (and some of those were absolutely awesome, because dammit, I needed an outlet!). I did a lot of themes from a group I'm in called "We're Here!".
I'm going to share a few of them as links, just so it doesn't clog everything up with huge photos (like my snow-removal rant two weeks ago).
Day 325- A Nighttime Portrait
Day 331- Binary Red (the theme was "Binary Love", so we had to do something related to binary code). This photo is my most popular photo on Flickr. Ever. In the first 24 hours, it had over 7500 views. This was a last-minute inspiration and it worked out great. As of the typing of this sentence, it was at 10,601 views. I cried when it hit 10,000. Because, you know, emotions and pain. (I'm selling prints of this photo in my Etsy shop)
Day 333- Rockin' Out I put my own twist on the "heavy metal horns".
Day 337- The Doctor Will See You Now The theme for this was "Twisted Flickr" and I am now officially out of red food coloring. And there's a comment on that photo by "Studio d'Xavier" that made me cry. This was also a last-minute inspiration, like "Binary Red" was... and it turned out great too.
Day 338- Setting things on fire Because sometimes, you gotta spin some burning steel wool to feel better.
So, despite being trapped indoors by the weather and fibrofuckingmyalgia and general ennui, I did manage to be creative a little. And also- because I can, here are some random snow-related photos.
And, here's some size reference for how tiny those snowflakes were...
I've also become obsessed with how the birdhouses look with snow falling all around them. I've taken many photos like this one from New Year's Eve.
And here's one from today-
And, a Christmas ornament in the snow (from New Year's Eve)-
And... one from today-
Wednesday, January 1, 2014
It sweeps! It clears! It removes dust, dirt, and snow! YES! SNOW!
HOW MUCH WOULD YOU PAY FOR SUCH AN AMAZING ITEM?!
What amazing item am I speaking of?
Why, it's the magical, incredible, AMAZING BROOM! That's right! Just a normal, everyday broom and guess what!
YOU PROBABLY HAVE ONE IN YOUR HOUSE RIGHT NOW!
*Photo courtesy of Pahz, from 2010, yes, I know I'm Pahz, but
c'mon, this makes it look legit and shit, right?*
Now, don't be alarmed! The broom is not going to hurt you. And you shouldn't be afraid of it and what it can do...
Let me begin by saying that I loathe housework. I hate it all in equal amounts, I don't discriminate when it comes to hating housework. HOWEVER- as much as I hate housework and try to avoid it as much as possible, I am aware of what a broom is and how it works.
Why am I telling you this in my fibro blog? Because I have a pet peeve and I need to share it. Part of that pet peeve is that, while I have a chronic pain disease- I can still manage to do certain things... like, say, clearing the snow off my vehicle before driving it.
There is no excuse for driving a vehicle around like this-
OR THIS!
Why? Aside from having an obstructed view from not clearing your rear window, THIS is what happens when you don't clear off the top of your vehicle-
And that, kids, is a hazard to whatever poor sap got stuck driving behind you and your lazy ass.
You have no excuse! You see, this stupid fibro thing makes my entire body hurt. If you're a regular reader of my whinings, you know that sometimes my body hurts so much that I can barely get out of bed. Sometimes, just parts of my body hurt. And today is no different. Today, my skin aches like I have a full-body bruise and my lower back is bothering me. I can't stretch- you know that thing you do when you're tired? You stretch your arms out, yawn or make a loud groaning noise... that. I can't do that anymore. It hurts too much.
And in previous bitching posts I've made about this topic, I mentioned that I did all this snow-clearing while walking with a cane. At one point, my knees were so bad that I had to walk with two canes. Two canes! I would lean one against my vehicle and remove the snow while leaning most of my weight on the other cane... and using that free hand to clear snow. And the Disabled Guy? He's paralyzed on his right side! He can't use his right hand or arm, and he still manages to clear off his vehicle! What the hell, man? You really have no excuse.
Now, that brings us to TODAY. I've been inside for almost an hour now and the cold I endured while outside has settled into my muscles and have made me so stiff I can barely turn my head to the side.
So, with my sometimes-debilitating chronic pain, I took this truck-
And made it into THIS-
"HOW DID YOU DO THAT!? ARE YOU A WIZARD!?" I hear you say, with amazement in your voice.
Yes, I am a wizard. AND THIS IS MY WAND!
This SIMPLE HOUSEHOLD ITEM IS AMAZING!!
However... as amazing as that is, I actually did not use this particular broom on my truck today. You see, they actually make specialized brooms for vehicles.
("NO WAY!" Yes way! TOTALLY!)
Here's one-
And, then there's this one!
I got mine at Walmart. You can get them at almost any store- be it the small-town destroying Walmart or the hardware store down the street where Old Man Geezer counts the nails and grumbles about "kids these days". (I just happen to live in an area where the Walmart empire has stomped the hell out of Old Man Geezer's lawn).
I used that second brush on my truck today. It isn't just a broom (with an ice scraper on the opposite end), it actually telescopes out to about four feet long. That's good news for people like me- I'm short (5'4 1/2" tall) and I have short arms (I didn't measure them, but they're proportionate with my short stature). With this amazing and magical tool, I turned this truck-
...into this truck-
I know what you're thinking... you're thinking: "One- I just saw those photos, and two- why are you showing us the same photos?" Would you like different photos? I can do that... let's see, you've already witnessed the magic of my amazing broom removing the snow from my mid-sized, four-door pickup truck. How about some before and after photos of the Disabled Guy's full-size pickup truck?
BECAUSE I TOTALLY CLEARED THAT OFF TOO!
Before!
After!
I know what you're saying- "What are those footprints around that full-size pickup truck? Are you saying I have to get out and walk in the snow?"
Well, yes. Unfortunately, everything we were told in school that we'd have in 2014 was wrong. "Flying cars", "pills as food", "robot maids", "self-snow-removing cars"... what? That last one? Just me? Well, I did go to school in Alaska. Unless you have a non-rusting robot maid to do it for you, you will have to put on a coat and go outside to do this yourself. But it isn't that hard! I've already explained the whole "I used to walk with two canes" and "now I have a robot knee and a chronic pain disease" and "hey, the Disabled Guy can only use one hand" thing, right?
YOU HAVE NO EXCUSE TO DRIVE AROUND IN A VEHICLE LIKE THIS-
Even if you DON'T have this fancy-ass snow brush made for vehicle clearing-
...you most definitely have one of these- Or, at least a version of this (there are others that look different, shaped differently, but they all have the similarities of "bristles" and a "handle").
So, c'mon, guys... don't be this guy-
Now, I've cleared off two vehicles, one mid-size pickup truck and one full-size pickup truck, and I dragged the snow-blower around my driveway in a half-ass fashion, and I've written this blog post. My fibro has caused all my muscles to tighten up and I dread standing up (which I'll have to do soon). Because on top of all that, I still have to go to the store.
But at least my truck is cleared off.
What amazing item am I speaking of?
Why, it's the magical, incredible, AMAZING BROOM! That's right! Just a normal, everyday broom and guess what!
YOU PROBABLY HAVE ONE IN YOUR HOUSE RIGHT NOW!
*Photo courtesy of Pahz, from 2010, yes, I know I'm Pahz, but
c'mon, this makes it look legit and shit, right?*
Now, don't be alarmed! The broom is not going to hurt you. And you shouldn't be afraid of it and what it can do...
Let me begin by saying that I loathe housework. I hate it all in equal amounts, I don't discriminate when it comes to hating housework. HOWEVER- as much as I hate housework and try to avoid it as much as possible, I am aware of what a broom is and how it works.
Why am I telling you this in my fibro blog? Because I have a pet peeve and I need to share it. Part of that pet peeve is that, while I have a chronic pain disease- I can still manage to do certain things... like, say, clearing the snow off my vehicle before driving it.
There is no excuse for driving a vehicle around like this-
OR THIS!
Why? Aside from having an obstructed view from not clearing your rear window, THIS is what happens when you don't clear off the top of your vehicle-
And that, kids, is a hazard to whatever poor sap got stuck driving behind you and your lazy ass.
You have no excuse! You see, this stupid fibro thing makes my entire body hurt. If you're a regular reader of my whinings, you know that sometimes my body hurts so much that I can barely get out of bed. Sometimes, just parts of my body hurt. And today is no different. Today, my skin aches like I have a full-body bruise and my lower back is bothering me. I can't stretch- you know that thing you do when you're tired? You stretch your arms out, yawn or make a loud groaning noise... that. I can't do that anymore. It hurts too much.
And in previous bitching posts I've made about this topic, I mentioned that I did all this snow-clearing while walking with a cane. At one point, my knees were so bad that I had to walk with two canes. Two canes! I would lean one against my vehicle and remove the snow while leaning most of my weight on the other cane... and using that free hand to clear snow. And the Disabled Guy? He's paralyzed on his right side! He can't use his right hand or arm, and he still manages to clear off his vehicle! What the hell, man? You really have no excuse.
Now, that brings us to TODAY. I've been inside for almost an hour now and the cold I endured while outside has settled into my muscles and have made me so stiff I can barely turn my head to the side.
So, with my sometimes-debilitating chronic pain, I took this truck-
And made it into THIS-
"HOW DID YOU DO THAT!? ARE YOU A WIZARD!?" I hear you say, with amazement in your voice.
Yes, I am a wizard. AND THIS IS MY WAND!
This SIMPLE HOUSEHOLD ITEM IS AMAZING!!
However... as amazing as that is, I actually did not use this particular broom on my truck today. You see, they actually make specialized brooms for vehicles.
("NO WAY!" Yes way! TOTALLY!)
Here's one-
And, then there's this one!
I got mine at Walmart. You can get them at almost any store- be it the small-town destroying Walmart or the hardware store down the street where Old Man Geezer counts the nails and grumbles about "kids these days". (I just happen to live in an area where the Walmart empire has stomped the hell out of Old Man Geezer's lawn).
I used that second brush on my truck today. It isn't just a broom (with an ice scraper on the opposite end), it actually telescopes out to about four feet long. That's good news for people like me- I'm short (5'4 1/2" tall) and I have short arms (I didn't measure them, but they're proportionate with my short stature). With this amazing and magical tool, I turned this truck-
...into this truck-
I know what you're thinking... you're thinking: "One- I just saw those photos, and two- why are you showing us the same photos?" Would you like different photos? I can do that... let's see, you've already witnessed the magic of my amazing broom removing the snow from my mid-sized, four-door pickup truck. How about some before and after photos of the Disabled Guy's full-size pickup truck?
BECAUSE I TOTALLY CLEARED THAT OFF TOO!
Before!
After!
I know what you're saying- "What are those footprints around that full-size pickup truck? Are you saying I have to get out and walk in the snow?"
Well, yes. Unfortunately, everything we were told in school that we'd have in 2014 was wrong. "Flying cars", "pills as food", "robot maids", "self-snow-removing cars"... what? That last one? Just me? Well, I did go to school in Alaska. Unless you have a non-rusting robot maid to do it for you, you will have to put on a coat and go outside to do this yourself. But it isn't that hard! I've already explained the whole "I used to walk with two canes" and "now I have a robot knee and a chronic pain disease" and "hey, the Disabled Guy can only use one hand" thing, right?
YOU HAVE NO EXCUSE TO DRIVE AROUND IN A VEHICLE LIKE THIS-
Even if you DON'T have this fancy-ass snow brush made for vehicle clearing-
...you most definitely have one of these- Or, at least a version of this (there are others that look different, shaped differently, but they all have the similarities of "bristles" and a "handle").
So, c'mon, guys... don't be this guy-
Now, I've cleared off two vehicles, one mid-size pickup truck and one full-size pickup truck, and I dragged the snow-blower around my driveway in a half-ass fashion, and I've written this blog post. My fibro has caused all my muscles to tighten up and I dread standing up (which I'll have to do soon). Because on top of all that, I still have to go to the store.
But at least my truck is cleared off.
Monday, December 16, 2013
Pahz Whines About Her Fibro
Well, that IS what this blog is for, isn't it? The name of this blog shouldn't be "Pahz Lives with Fibro", it should be: "Pahz Whines about Fibro and doesn't help anyone with any REAL information because she's not a medical professional and is definitely not a source of info on this issue" but that was too long for me to Photoshop into a banner image. (I really need to redo my banner, I've gotten so much better at Photoshop since I made that thing).
But here we are, going on 1 AM on Tuesday morning. (as opposed to "1 AM on Tuesday afternoon"). I went to bed a little after 10 PM. I had a decent enough day. Halfway through the day, it started snowing and of course, I went outside and took macro photos of snowflakes. I stood out there, hunched over the gas grill we never use, holding my camera up with my hands in my super-cozy fingerless gloves. I wasn't outside for very long, but the snow was the heavy, wet kind and after only a few minutes, my fingers were so cold and stiff I could barely move them. And they had reached that point of cold where touching my skin hurt, so I figured it was time to go inside. (I later found out that our high was 16° Fahrenheit, which would account for how I got so cold, so quickly). I spent the rest of the afternoon and evening trying not to get up and move around. After being seated for several minutes, any moving resulted in sharp pain in all my muscles.
When I went to bed, I said to the Disabled Guy (who doesn't give a damn about it) that: "At least today's weather explains why I haven't slept good for two nights" and he muttered an "uh-huh" as I walked up the stairs. I got settled into bed, my super-soft fleece blankets all situated and I was getting that all-over warm cozy feeling when things took an ugly turn. As my body settled into the bed, gravity increased its harsh grip and felt like it was trying to pull me through the bed to the floor. Every time I tried to relax my muscles (I start at my feet and work my way up- its a sleep inducing exercise I learned when I worked nights), they'd tense up harsher than they had been before I tried to relax. I changed my position, which caused me a grimace-and-whine-inducing bout of pain.
I ended up fairly comfortable on my back, propped up slightly by my pillows and with my arms at my sides. Every single joint in my body throbbed in agony with every heartbeat. My hands and arms felt swollen (they aren't visibly swollen though). My skin was starting to do that burning thing it does in a flareup (at least there was no itching!). My muscles felt like they were being pulled out of my body. My larger muscles, like the thigh muscles and the shoulder/upper-back muscles felt like they were being scraped off my skin with a flat, dull, burning blade.
After almost two hours, I got out of bed. And that brings us to now- closer to 1 AM than when I started this blog post and two more 5/325 Hydrocodone tablets (approximately seven hours after my normal nightly dose). My hands still feel swollen and stiff and my joints are still aching. But the burning pain is starting to subside. This strawberry Jolly Rancher hard candy tastes terrible. The music I'm listening to is awesome (MKIII by Steam Powered Giraffe) and I'm feeling kind of hungry. But I don't have anything in the house that I can eat without having to 1- get up to go get and 2- cook it.
And, I'm not the least bit tired. But at least I'm wearing this awesome hat, which is the one I'm wearing in my profile photo here. That's right, I wear my awesome accessories when I feel terrible because I like them and I will do every little thing I can do to make me feel better.
Now that I've passed the 1 AM mark because I was getting the links to the various things I linked to up there, the Hydrocodone has helped a little. This raspberry Jolly Rancher isn't much better than the strawberry one. The music is still awesome and so is my hat. (also- I just realized that my hands and fingers feel this way because of the Reynaud's that was triggered by the bitter cold Monday afternoon while taking photos).
I also remembered there's some frozen pizza in the kitchen. That's pretty much the least amount of work for something edible. Throw it into the oven and then sit down for 20 minutes.
Now if I could get to sleep, all of Tuesday's problems would be better.
And because I mentioned them, here are a few of the photos I took- snowflake macros. If you'd like to see more (or see these larger), just click a photo, it'll take you to my Flickr.
For size reference on how tiny the snowflakes were and look, my fur-trimmed fingerless gloves from The Sheepskin Shop at the Bristol Renaissance Faire. I had to switch to auto-focus to get this shot and the lens chose to focus on the fur trim on the gloves instead of my fingers.
But here we are, going on 1 AM on Tuesday morning. (as opposed to "1 AM on Tuesday afternoon"). I went to bed a little after 10 PM. I had a decent enough day. Halfway through the day, it started snowing and of course, I went outside and took macro photos of snowflakes. I stood out there, hunched over the gas grill we never use, holding my camera up with my hands in my super-cozy fingerless gloves. I wasn't outside for very long, but the snow was the heavy, wet kind and after only a few minutes, my fingers were so cold and stiff I could barely move them. And they had reached that point of cold where touching my skin hurt, so I figured it was time to go inside. (I later found out that our high was 16° Fahrenheit, which would account for how I got so cold, so quickly). I spent the rest of the afternoon and evening trying not to get up and move around. After being seated for several minutes, any moving resulted in sharp pain in all my muscles.
When I went to bed, I said to the Disabled Guy (who doesn't give a damn about it) that: "At least today's weather explains why I haven't slept good for two nights" and he muttered an "uh-huh" as I walked up the stairs. I got settled into bed, my super-soft fleece blankets all situated and I was getting that all-over warm cozy feeling when things took an ugly turn. As my body settled into the bed, gravity increased its harsh grip and felt like it was trying to pull me through the bed to the floor. Every time I tried to relax my muscles (I start at my feet and work my way up- its a sleep inducing exercise I learned when I worked nights), they'd tense up harsher than they had been before I tried to relax. I changed my position, which caused me a grimace-and-whine-inducing bout of pain.
I ended up fairly comfortable on my back, propped up slightly by my pillows and with my arms at my sides. Every single joint in my body throbbed in agony with every heartbeat. My hands and arms felt swollen (they aren't visibly swollen though). My skin was starting to do that burning thing it does in a flareup (at least there was no itching!). My muscles felt like they were being pulled out of my body. My larger muscles, like the thigh muscles and the shoulder/upper-back muscles felt like they were being scraped off my skin with a flat, dull, burning blade.
After almost two hours, I got out of bed. And that brings us to now- closer to 1 AM than when I started this blog post and two more 5/325 Hydrocodone tablets (approximately seven hours after my normal nightly dose). My hands still feel swollen and stiff and my joints are still aching. But the burning pain is starting to subside. This strawberry Jolly Rancher hard candy tastes terrible. The music I'm listening to is awesome (MKIII by Steam Powered Giraffe) and I'm feeling kind of hungry. But I don't have anything in the house that I can eat without having to 1- get up to go get and 2- cook it.
And, I'm not the least bit tired. But at least I'm wearing this awesome hat, which is the one I'm wearing in my profile photo here. That's right, I wear my awesome accessories when I feel terrible because I like them and I will do every little thing I can do to make me feel better.
Now that I've passed the 1 AM mark because I was getting the links to the various things I linked to up there, the Hydrocodone has helped a little. This raspberry Jolly Rancher isn't much better than the strawberry one. The music is still awesome and so is my hat. (also- I just realized that my hands and fingers feel this way because of the Reynaud's that was triggered by the bitter cold Monday afternoon while taking photos).
I also remembered there's some frozen pizza in the kitchen. That's pretty much the least amount of work for something edible. Throw it into the oven and then sit down for 20 minutes.
Now if I could get to sleep, all of Tuesday's problems would be better.
And because I mentioned them, here are a few of the photos I took- snowflake macros. If you'd like to see more (or see these larger), just click a photo, it'll take you to my Flickr.
For size reference on how tiny the snowflakes were and look, my fur-trimmed fingerless gloves from The Sheepskin Shop at the Bristol Renaissance Faire. I had to switch to auto-focus to get this shot and the lens chose to focus on the fur trim on the gloves instead of my fingers.
Thursday, December 5, 2013
Strange dream...
I know I've mentioned it before- the feeling of "cold settling into my muscles" and ending up so stiff and in pain. And it has to be a very cold day for that to happen. I mean, it isn't like I sit here at my desk and catch a chill that immediately invades all my muscles and then camps out in my bones.
Well, not every time, anyway. But it happens. The cold feels like it seeps in and by the time you realize it, you're as cold and stiff as Frosty the Snowman's... nose. Damn, guys, you have a dirty mind.
I've been going through quite a bit of stress lately (well, obviously, because- dammit, Dad!) and my flareups have been all over the place.
So, this dream...
In the dream, I was on some kind of photo walk. That's when a group of photographers of varying skill meet up and walk around taking photos. A lot of photo walks are done in cities (I think the nature hike ones are called something else, but you get my meaning...). So, I was on this photo walk (which is weird in the sense that I don't do photo walks because of the whole "walking" thing) with a group of people I'd never met before. Obviously I knew at least one of them in the dream, because I talked to one person mostly. Some guy who had been on this particular photo walk several times. During the course of our photo walk, we ended up on a cold and windy beach (it felt like Lake Michigan in Milwaukee to me) and after we all snapped photos for a few minutes, everyone put away their camera gear and started taking off their clothes.
I'd been explaining to my unnamed friend how I was so cold that I could barely move. My muscles were frozen and I did the whole "cold settling" explanation. And when he started taking off his clothes, he said: "Since this is your first time, you don't have to participate in this part. Its just something we do- you know, bonding and all."
And like a sitcom, everyone was disrobing and laughing and joking, even poking fun at my obvious modesty. At this point, I said to myself- "Well, this is obviously a dream" because in my dreams, I'm thinner and look a little younger. And I had a fancier camera than I actually have. In the other types of dreams- I'm as I am now, in my 40s, overweight... So, in this dream, I'm explaining to one of the others that this is so obviously a dream because of my physical appearance. And the group all go into the water. They exclaim and laugh about the chill. And I tell my unnamed friend again that I can't get into the water because of the cold thing. And they're all cool with it and tell me its okay to just wait for them...
And like a sitcom (again)- I see another group of people coming down the path and suddenly, I don't want to be left out and I quickly remove my clothes and shuffle to the water. And the water was really warm. I said: "Wow! The water is so much warmer than I expected!" and everyone chimed in with their agreement.
Then some man called out: "The water is really warm over here!"
Several people groaned and expressed disgust and another man called out: "Everyone stay away from Dave, he's pissed in the lake again!"
I remember thinking: "Aw, Dave, what the hell, man?" and I woke up.
I woke up in my bed, my muscles so sore that I could barely move. I felt like my muscles were that "to the bone cold" and "burning" in pain. I sat up slowly and said: "Dammit, Dave... you had to go and ruin our swim."
So, I've taken pain meds already this morning.
And I'd really like to know what I took photos of on that photo walk before everyone got naked and went swimming.
Well, not every time, anyway. But it happens. The cold feels like it seeps in and by the time you realize it, you're as cold and stiff as Frosty the Snowman's... nose. Damn, guys, you have a dirty mind.
I've been going through quite a bit of stress lately (well, obviously, because- dammit, Dad!) and my flareups have been all over the place.
So, this dream...
In the dream, I was on some kind of photo walk. That's when a group of photographers of varying skill meet up and walk around taking photos. A lot of photo walks are done in cities (I think the nature hike ones are called something else, but you get my meaning...). So, I was on this photo walk (which is weird in the sense that I don't do photo walks because of the whole "walking" thing) with a group of people I'd never met before. Obviously I knew at least one of them in the dream, because I talked to one person mostly. Some guy who had been on this particular photo walk several times. During the course of our photo walk, we ended up on a cold and windy beach (it felt like Lake Michigan in Milwaukee to me) and after we all snapped photos for a few minutes, everyone put away their camera gear and started taking off their clothes.
I'd been explaining to my unnamed friend how I was so cold that I could barely move. My muscles were frozen and I did the whole "cold settling" explanation. And when he started taking off his clothes, he said: "Since this is your first time, you don't have to participate in this part. Its just something we do- you know, bonding and all."
And like a sitcom, everyone was disrobing and laughing and joking, even poking fun at my obvious modesty. At this point, I said to myself- "Well, this is obviously a dream" because in my dreams, I'm thinner and look a little younger. And I had a fancier camera than I actually have. In the other types of dreams- I'm as I am now, in my 40s, overweight... So, in this dream, I'm explaining to one of the others that this is so obviously a dream because of my physical appearance. And the group all go into the water. They exclaim and laugh about the chill. And I tell my unnamed friend again that I can't get into the water because of the cold thing. And they're all cool with it and tell me its okay to just wait for them...
And like a sitcom (again)- I see another group of people coming down the path and suddenly, I don't want to be left out and I quickly remove my clothes and shuffle to the water. And the water was really warm. I said: "Wow! The water is so much warmer than I expected!" and everyone chimed in with their agreement.
Then some man called out: "The water is really warm over here!"
Several people groaned and expressed disgust and another man called out: "Everyone stay away from Dave, he's pissed in the lake again!"
I remember thinking: "Aw, Dave, what the hell, man?" and I woke up.
I woke up in my bed, my muscles so sore that I could barely move. I felt like my muscles were that "to the bone cold" and "burning" in pain. I sat up slowly and said: "Dammit, Dave... you had to go and ruin our swim."
So, I've taken pain meds already this morning.
And I'd really like to know what I took photos of on that photo walk before everyone got naked and went swimming.
Wednesday, November 27, 2013
Oh... Good morning, Full-blown flareup...
I'd wondered where you'd gone...
Not really. I didn't miss you at all.
I knew where you were.
I knew that you'd be back and you'd be an inconvenience.
Ha.
Inconvenience. As if you were an idiot driver in my morning commute.
Ha.
As if I have a morning commute.
I suppose you could call that walk from my bedroom to the computer desk in the dining room a commute. I have to navigate it in the dark and watch for obstacles in the form of several Chihuahuas and one large German Shepherd.
I didn't miss you.
I knew that you were gone merely because of the stress I was under. I've been on the edge of tears and walking the line of anger versus frustration for weeks now. I knew that was what was keeping you away.
Ha.
As if you could be "kept away".
You didn't have to come back today. I have too much to do and I really wanted to do it without taking pain meds.
I have to bake some pies.
I have to meet up with the brother because for some insane reason, he's decided that he should be involved in things. And it isn't even like he's been involved in things. Like, ever. And I don't need to justify his actions with "oh, he feels guilty" because I don't goddamn care how he feels.
As I type this, the Vicodin has mixed with the muscle relaxers that I take on an empty stomach at 530 AM. The intense pain I woke up with has taken a few steps back from the "unbearable and tear-inducing" to "tolerable but I will cut you, bitch" levels.
Ha.
As if pain meds actually do anything beyond taking the edge off the pain.
Well, here we are... 619 AM as I type this sentence. You're bubbling just under the surface. I knew it was going to happen because last night when I finally went to bed, I had trouble falling to sleep. Not from pain- because, fuck you, pain- but from that itchy thing. The millions of hairy-legged spiders that have been dormant for a few weeks awoke with their own version of hairy-legged Spider Restless Leg Syndrome.
Ha...
I like how I act like I can control you.
Hot spots- my left wrist. My left foot.
I wonder if I can win an Oscar for that... he won an Oscar, right?
If you don't know what I'm talking about, then ouch.... you're younger than I thought.
After having to deal with the brother, I'm going to come home- wait, that's not true. I'm going to get my dad's mail at the post office, water the plants in his condo, then I'm going to come home. I'm going to bake pies and listen to "An Evening with Neil Gaiman and Amanda Palmer" (its over five hours long and I'm listening to part of it now) and I'm going to hang up the art prints I got at Teslacon.
And to get through it, I will take more Vicodin.
Ha.
Like Vicodin actually helps.
It won't kill the pain, but it makes it bearable.
If I see one of those "chronic widespread pain" commercials, I will cut a bitch.
Ha.
Like I could cut a human with these sore, weak-as-fuck hands.
I just had to Google a fibro commercial because I couldn't remember the drug. Lyrica. And the first line was: "I had chronic, widespread pain for months. It wouldn't go away. The doctor diagnosed me with fibromyalgia..."
Ha.
"Months".
Nice one, Lyrica. I really needed that laugh today.
Good morning, Full-blown Fibrofuckingmyalgia Flareup.
Go to Hell.
Not really. I didn't miss you at all.
I knew where you were.
I knew that you'd be back and you'd be an inconvenience.
Ha.
Inconvenience. As if you were an idiot driver in my morning commute.
Ha.
As if I have a morning commute.
I suppose you could call that walk from my bedroom to the computer desk in the dining room a commute. I have to navigate it in the dark and watch for obstacles in the form of several Chihuahuas and one large German Shepherd.
I didn't miss you.
I knew that you were gone merely because of the stress I was under. I've been on the edge of tears and walking the line of anger versus frustration for weeks now. I knew that was what was keeping you away.
Ha.
As if you could be "kept away".
You didn't have to come back today. I have too much to do and I really wanted to do it without taking pain meds.
I have to bake some pies.
I have to meet up with the brother because for some insane reason, he's decided that he should be involved in things. And it isn't even like he's been involved in things. Like, ever. And I don't need to justify his actions with "oh, he feels guilty" because I don't goddamn care how he feels.
As I type this, the Vicodin has mixed with the muscle relaxers that I take on an empty stomach at 530 AM. The intense pain I woke up with has taken a few steps back from the "unbearable and tear-inducing" to "tolerable but I will cut you, bitch" levels.
Ha.
As if pain meds actually do anything beyond taking the edge off the pain.
Well, here we are... 619 AM as I type this sentence. You're bubbling just under the surface. I knew it was going to happen because last night when I finally went to bed, I had trouble falling to sleep. Not from pain- because, fuck you, pain- but from that itchy thing. The millions of hairy-legged spiders that have been dormant for a few weeks awoke with their own version of hairy-legged Spider Restless Leg Syndrome.
Ha...
I like how I act like I can control you.
Hot spots- my left wrist. My left foot.
I wonder if I can win an Oscar for that... he won an Oscar, right?
If you don't know what I'm talking about, then ouch.... you're younger than I thought.
After having to deal with the brother, I'm going to come home- wait, that's not true. I'm going to get my dad's mail at the post office, water the plants in his condo, then I'm going to come home. I'm going to bake pies and listen to "An Evening with Neil Gaiman and Amanda Palmer" (its over five hours long and I'm listening to part of it now) and I'm going to hang up the art prints I got at Teslacon.
And to get through it, I will take more Vicodin.
Ha.
Like Vicodin actually helps.
It won't kill the pain, but it makes it bearable.
If I see one of those "chronic widespread pain" commercials, I will cut a bitch.
Ha.
Like I could cut a human with these sore, weak-as-fuck hands.
I just had to Google a fibro commercial because I couldn't remember the drug. Lyrica. And the first line was: "I had chronic, widespread pain for months. It wouldn't go away. The doctor diagnosed me with fibromyalgia..."
Ha.
"Months".
Nice one, Lyrica. I really needed that laugh today.
Good morning, Full-blown Fibrofuckingmyalgia Flareup.
Go to Hell.
Thursday, November 21, 2013
The longest 2 1/2 weeks of my life so far...
If you're on my Facebook, then you already know. My father passed away on November 4th. It was sudden. We certainly weren't expecting it. He called me that afternoon. He asked me how Teslacon went (it was fantastic, in case you were wondering), we talked about the kids and what they were up to, and he asked to borrow a nail gun. No rush on it, he was done traveling for the year and was going to winterize his RV. It was about a fifteen minute call, around 130 PM.
At 1130 PM, I got the call from the ER in town. I had just gone to bed because I was editing my Teslacon photos. I had just literally hit the pillow with my head when the phone rang. Of course, they wouldn't tell me anything over the phone. I rushed to the hospital the same way I did when Dad called me about Mom. I ran a red light or two, ran a stop sign or few. [here's the blog post about my mom]
At the ER, they took me to the "Quiet Room". That's what the room is actually called. I knew something bad was happening. Because "Quiet Room", really? I was hoping they'd come in and tell me he had a heart attack, they found more blockages, he was sedated, they would do surgery soon... because he was fine. Moments after they left me in the Quiet Room, the ER nurse came in. Before she even completed the sentence, I burst into tears. I sobbed, I don't remember what she told me during those moments.
I asked if I could see him. Because it didn't feel real. It couldn't be real. It hadn't been two years yet, since Mom died. I wasn't ready for this. While leading me to the room, she was telling me things like how he would have tubes in him, the medications they pumped into him caused some bloating, and I said: "I was there when he had two bypass surgeries, I've seen him like that." Or something similar. My point was that I've seen him looking terrible and full of tubes.
He looked normal. His eyes were open. I paced a bit in that big room, as the two nurses (I don't know where the second one came from) gave me details. He was at a neighbor's house. The paramedics shocked him six times. The ER another five times. Since he wasn't in his own house, they didn't have his emergency paper that had the list of his medications and my contact information. They looked in his cell phone (an extremely old flip-phone) and didn't know who to call. I was first in the list. "A-Patty Daughter Home" and "B-Patty Daughter Cell" because he wanted my phone number at the top of the list. (he changed that in his phone when my mom became too sick). They called and left a message on my brother's cell phone. Then they called my cousin in Arizona- because they had the same uncommon last name as my dad.
My name? Smith.
The nurse remembered the name- because my mom was a home health aid, so she searched the internet for my mom's obituary. And found my name. And called my home phone from the local phone book.
So, pacing a little. It was probably three steps, turn, three steps. The nurse asked if I had any questions. I said: "No." I looked at my dad and said: "Dammit, Dad. I'm not ready for this." and I looked over at the nurse: "I wasn't done with him yet, you know? I still needed him."
They gave me his belongings. They took the Masonic ring off his hand and gave it to me. He had his and Mom's wedding rings melted down and made into that one ring. They led me back to the Quiet Room. I called my house and told the Disabled Guy he needed to come to the hospital. Then I called my Uncle David and Aunt Sandy. That's my mom's brother. I didn't know who else to call yet. After Aunt Sandy offered to come to the hospital, I called my kids. My daughters live out of town, both are in college. My son lives closer. He came to the hospital. Somewhere in the middle, I called my brother from my dad's phone. I actually called his wife's cell phone.
The conversation that I had was absolutely, stunningly ridiculous. I started to cry again while talking to them. I had to repeat myself over and over that it was Dad. And he died. I was at the ER and Dad died. And there I was, having the stupidest conversation in the world with the brother who cut himself off from the family for almost a decade. In the two years since Mom died, it wasn't much better. The whole time I was talking to first his wife, then my brother- all I could think was: "I'm having the Jackie conversation right now."
I wish I was exaggerating. Of course, I didn't end it the same way, but that's essentially how it went. (with sobbing in between, of course).
My aunt and uncle showed up shortly after the Disabled Guy arrived. My son showed up. The coroner showed up and we went through the paperwork part of a relative's death. Then the brother and his wife. Aunt Sandy called my Aunt Janet (Dad's sister). The brother kept saying: "I just talked to him. I just talked to him on his birthday."
Really? His birthday. His birthday on September 5th. You just talked to him two months ago. Oh. Okay. Well, I had just talked to him about nine hours before the ER called me.
My daughter- the older one- lives about forty minutes to the north of us. The younger one lives in the dorm at her college in the same town with the ren faire (an hour and a half away from us). Kat and her boyfriend, Tyler, drove out to Christine's college and picked her up. In the almost-two-hours it took them to get there, Christine's friends were with her.
The one thing I did that night that I absolutely regret- I gave my brother that ring. My dad told me a year ago that he had it made and that it was with their wedding rings. Since it was a Mason ring, I was supposed to give it to the brother, because he was a Mason. Even though he hasn't been to a Mason meeting or event in about 15 years. Even though he cut himself from the family for almost ten years. Even though he was a terrible brother and an awful son and even less of a Mason. The next day, I wished that I hadn't given it to him. He doesn't deserve it.
The memorial service at the funeral home was a special piece of hell. But, they had forty-three Masons in attendance. The funeral home guy said that it was the most Masons they ever had before. He said usually there's ten to fifteen, sometimes twenty. I'm friends with a few of the Masons on Facebook because I've taken photos of the Masonic events (I've been to more Mason-related events in the past year than the brother has in the last fifteen years) and I was told they ran out of aprons. (the Masons wear aprons- if you weren't aware). The Mason funeral service is amazing. And it took ages to get through all those Masons who attended. After they did their thing, they lined up and filed out of the room, pausing to shake hands with the family.
Well, they shook hands with the brother, his wife, the stepson, then Christine, then me. When the Disabled Guy sat down, in an effort to stay out of the way, he sat in the third row back instead of the first. And my kids sat with him. Before the Masons started their service, Christine came up and sat with me. But it should have been just us up there. Me, the Disabled Guy, Kat, (with Tyler), Jason (with Courtney), and Christine. That's it.
As they filed by, I couldn't hold it in anymore. I had tissues in my left hand and I just sobbed into my hand as they took my right hand and expressed their condolences. They grasped my hand, said a few words, and passed my hand off to the next person. I don't even know how I held my hand up- they were probably holding my hand up for me at that point. The Masons I knew paused to hug me.
I'm the executor of the estate. The amount of emotional turmoil I'm having mixed with the stress- it has been surprisingly mild on my fibro. I'm still in pain, but my body is coping with the stress which is helping me muscle through the pain. My hot spots have been absolute agony and the first two weeks, I didn't take any daytime pain meds because I wanted to be absolutely clear-headed.
These last two and a half weeks have been awful and doing my 365 feels more like a chore than anything enjoyable. This may be my last one- I'm going to finish this one (I have less than 90 days left) but I don't feel like I want to start year five. I guess we'll just have to wait and see.
Oh, one thing- my parents used to joke that they wouldn't die "during faire season" because they knew how busy both Christine and I were during faire season. Dad died the day after Teslacon- which was my last event for the year. (its a Steampunk convention, but most of the cast and tons of patrons were from my faire family). We did have a chuckle about that- perfect timing, Dad.
At 1130 PM, I got the call from the ER in town. I had just gone to bed because I was editing my Teslacon photos. I had just literally hit the pillow with my head when the phone rang. Of course, they wouldn't tell me anything over the phone. I rushed to the hospital the same way I did when Dad called me about Mom. I ran a red light or two, ran a stop sign or few. [here's the blog post about my mom]
At the ER, they took me to the "Quiet Room". That's what the room is actually called. I knew something bad was happening. Because "Quiet Room", really? I was hoping they'd come in and tell me he had a heart attack, they found more blockages, he was sedated, they would do surgery soon... because he was fine. Moments after they left me in the Quiet Room, the ER nurse came in. Before she even completed the sentence, I burst into tears. I sobbed, I don't remember what she told me during those moments.
I asked if I could see him. Because it didn't feel real. It couldn't be real. It hadn't been two years yet, since Mom died. I wasn't ready for this. While leading me to the room, she was telling me things like how he would have tubes in him, the medications they pumped into him caused some bloating, and I said: "I was there when he had two bypass surgeries, I've seen him like that." Or something similar. My point was that I've seen him looking terrible and full of tubes.
He looked normal. His eyes were open. I paced a bit in that big room, as the two nurses (I don't know where the second one came from) gave me details. He was at a neighbor's house. The paramedics shocked him six times. The ER another five times. Since he wasn't in his own house, they didn't have his emergency paper that had the list of his medications and my contact information. They looked in his cell phone (an extremely old flip-phone) and didn't know who to call. I was first in the list. "A-Patty Daughter Home" and "B-Patty Daughter Cell" because he wanted my phone number at the top of the list. (he changed that in his phone when my mom became too sick). They called and left a message on my brother's cell phone. Then they called my cousin in Arizona- because they had the same uncommon last name as my dad.
My name? Smith.
The nurse remembered the name- because my mom was a home health aid, so she searched the internet for my mom's obituary. And found my name. And called my home phone from the local phone book.
So, pacing a little. It was probably three steps, turn, three steps. The nurse asked if I had any questions. I said: "No." I looked at my dad and said: "Dammit, Dad. I'm not ready for this." and I looked over at the nurse: "I wasn't done with him yet, you know? I still needed him."
They gave me his belongings. They took the Masonic ring off his hand and gave it to me. He had his and Mom's wedding rings melted down and made into that one ring. They led me back to the Quiet Room. I called my house and told the Disabled Guy he needed to come to the hospital. Then I called my Uncle David and Aunt Sandy. That's my mom's brother. I didn't know who else to call yet. After Aunt Sandy offered to come to the hospital, I called my kids. My daughters live out of town, both are in college. My son lives closer. He came to the hospital. Somewhere in the middle, I called my brother from my dad's phone. I actually called his wife's cell phone.
The conversation that I had was absolutely, stunningly ridiculous. I started to cry again while talking to them. I had to repeat myself over and over that it was Dad. And he died. I was at the ER and Dad died. And there I was, having the stupidest conversation in the world with the brother who cut himself off from the family for almost a decade. In the two years since Mom died, it wasn't much better. The whole time I was talking to first his wife, then my brother- all I could think was: "I'm having the Jackie conversation right now."
I wish I was exaggerating. Of course, I didn't end it the same way, but that's essentially how it went. (with sobbing in between, of course).
My aunt and uncle showed up shortly after the Disabled Guy arrived. My son showed up. The coroner showed up and we went through the paperwork part of a relative's death. Then the brother and his wife. Aunt Sandy called my Aunt Janet (Dad's sister). The brother kept saying: "I just talked to him. I just talked to him on his birthday."
Really? His birthday. His birthday on September 5th. You just talked to him two months ago. Oh. Okay. Well, I had just talked to him about nine hours before the ER called me.
My daughter- the older one- lives about forty minutes to the north of us. The younger one lives in the dorm at her college in the same town with the ren faire (an hour and a half away from us). Kat and her boyfriend, Tyler, drove out to Christine's college and picked her up. In the almost-two-hours it took them to get there, Christine's friends were with her.
The one thing I did that night that I absolutely regret- I gave my brother that ring. My dad told me a year ago that he had it made and that it was with their wedding rings. Since it was a Mason ring, I was supposed to give it to the brother, because he was a Mason. Even though he hasn't been to a Mason meeting or event in about 15 years. Even though he cut himself from the family for almost ten years. Even though he was a terrible brother and an awful son and even less of a Mason. The next day, I wished that I hadn't given it to him. He doesn't deserve it.
The memorial service at the funeral home was a special piece of hell. But, they had forty-three Masons in attendance. The funeral home guy said that it was the most Masons they ever had before. He said usually there's ten to fifteen, sometimes twenty. I'm friends with a few of the Masons on Facebook because I've taken photos of the Masonic events (I've been to more Mason-related events in the past year than the brother has in the last fifteen years) and I was told they ran out of aprons. (the Masons wear aprons- if you weren't aware). The Mason funeral service is amazing. And it took ages to get through all those Masons who attended. After they did their thing, they lined up and filed out of the room, pausing to shake hands with the family.
Well, they shook hands with the brother, his wife, the stepson, then Christine, then me. When the Disabled Guy sat down, in an effort to stay out of the way, he sat in the third row back instead of the first. And my kids sat with him. Before the Masons started their service, Christine came up and sat with me. But it should have been just us up there. Me, the Disabled Guy, Kat, (with Tyler), Jason (with Courtney), and Christine. That's it.
As they filed by, I couldn't hold it in anymore. I had tissues in my left hand and I just sobbed into my hand as they took my right hand and expressed their condolences. They grasped my hand, said a few words, and passed my hand off to the next person. I don't even know how I held my hand up- they were probably holding my hand up for me at that point. The Masons I knew paused to hug me.
I'm the executor of the estate. The amount of emotional turmoil I'm having mixed with the stress- it has been surprisingly mild on my fibro. I'm still in pain, but my body is coping with the stress which is helping me muscle through the pain. My hot spots have been absolute agony and the first two weeks, I didn't take any daytime pain meds because I wanted to be absolutely clear-headed.
There have been a few moments when I absolutely cannot go on and end up in tears. Mostly when all the complicated estate stuff comes up. Because I have so many questions and the person I would have called is Dad. He has a guy for everything. Well, now I have some of his guys. They're my guys now.
Here's my 365 from the morning after the ER. Just like Mom's.
These last two and a half weeks have been awful and doing my 365 feels more like a chore than anything enjoyable. This may be my last one- I'm going to finish this one (I have less than 90 days left) but I don't feel like I want to start year five. I guess we'll just have to wait and see.
Oh, one thing- my parents used to joke that they wouldn't die "during faire season" because they knew how busy both Christine and I were during faire season. Dad died the day after Teslacon- which was my last event for the year. (its a Steampunk convention, but most of the cast and tons of patrons were from my faire family). We did have a chuckle about that- perfect timing, Dad.
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