Wednesday, December 28, 2011

I have some sad news to report..

For those of you who aren't on my Facebook, my mother passed away on Christmas night.

She was an adult-onset diabetic. And she was a good one. Followed orders, changed her diet, was careful about everything. In 2009, when I had my knee replaced, she lost a couple of toes. I spent two weeks at their house after my surgery where both of us were whacked on the Oxycontin family of narcotics. She seemed to improve, then her foot started going bad again. They decided to put some stents in her leg. I missed the second day of a ren faire for that surgery because they did it on a Sunday because they didn't want to wait any longer. When she went under for that surgery, she was certain she was going to wake up without her leg. When she was back in her room after recovery, she came to, asked the nurse to move the blanket. She looked at her missing-toed foot and said, "Good. I can sleep now."

Since 2009, she was in and out of the hospital far more times than I can remember. When they were both officially retired (2003), my parents started traveling around the country in their RV for months at a time. They cut their 2010 RV trip short in March and that's when they took half of her foot. That's also when they decided to announce she was starting renal failure. Of course, I and every one of my kids would have donated a kidney if we could have- but Mom's blood type is a negative and we're all positive (I have my dad's blood type, obviously).

In August this year, my dad sold their giant RV. He said that maybe they'd get a smaller RV and still go around locally like they used to when they both worked, but he also knew that wouldn't happen. In fact, Summer of 2011 marked the 41st year they spent going camping. We started in the summer when I was just a baby- in a tent! They worked their way up from a tent to a pop-up camper, to larger pull-behind trailers to the massive rolling castle they had most recently.

In February this year, they put a dialysis catheter in and after hemming and hawing and four surgeries to correct issues with the cath, she started doing dialysis from home in October. She seemed to respond well and it looked like maybe Dad would get to buy that small RV. In November, she wasn't draining properly because scar tissue grew over the cath's opening. They thought they fixed the problem, but in late November, they realized there was probably other problems.

December 10th, Dad woke up at 4 AM and checked on Mom. She asked him to call for an ambulance because she didn't feel well. And if she wanted an ambulance, he knew this was a serious "didn't feel well". She seemed to improve and decline nearly daily. She suddenly started having spikes and drops in her blood sugar and nobody could figure out why. Last week, her glucose dropped to 38! For Mom, the normal range was 80 to 115. (they moved her to the CCU that night) They realized sometime that day (before the drop to 38) that the problem she was having was that she had some kind of internal leak and the fluid they use for the home version of dialysis was being leaked into her body and gathering around her lungs. They tapped her lung area, got a couple pints of fluid off it and decided to start hemodialysis. She did so well on that. She seemed like her old self, just tired. We exchanged our usual gallows humor when I was visiting her one day during one of those four-hour hemodialysis sessions.

They moved her from the Critical Care unit back to the Intermediate Care unit on Friday. She was still getting the hemodialysis and on Friday morning, she refused it. She said she didn't "feel right" and wanted to be left alone. The doctor talked her into doing it that afternoon. On Sunday (Christmas Day, for all of you keeping track), she was tired and would doze off. We were all there- my dad, me and the disabled guy and our three kids. I brought both my parents some pie- apple for Dad (he loves my apple pie) and a sliver of pumpkin for Mom. I had permission to bring her a piece that she'd eat- I think the nurses expected a standard size piece of pie, but Mom didn't eat a lot of pie.

Anyway, she ate her pie after she tried to eat her lunch. She managed about five forkfuls of mashed potatoes, so I wasn't sure she'd even be able to eat the pie. But she did. All of it. Dad later told me she had hospital food-pie after dinner.

We spent a couple hours there, talking and laughing and trying to be quiet since we were in a hospital and my parents raised me right and I raised my kids right and we're all courteous of other people- but I digress.

I went to bed a little late, around 11-ish or so. I was in bed with my legs elevated (I've been swelling a little more than usual lately) and I had just answered a message to a friend on Facebook and set my phone down. Moments later, my land line rang. I knew it was Dad. When I answered it, he asked: "Are you drive-able?" (he knows of my nightly Vicodin/muscle relaxer cocktails).

I replied, "I can be, what's going on?"

He said that the hospital called and we needed to get up there right away. I leapt out of bed, threw on my too-big yoga pants, giant blue shirt and slipped my sneakers on without socks. I grabbed my jacket and a hoodie on my way out the door. I broke many speeding laws getting to the hospital. I beat Dad by about five minutes. I waited for him, though, because I didn't want to face any sudden medical decisions (I was on Mom's medical decisions list with Dad) all by myself. Dad arrived. We went up together. They stopped us in the hall to tell us she hadn't been moved to the ICU yet, to go down to her regular room.

On our way down the hall, the floor's head nurse stopped us. She told us how Mom was talking to a nurse while they were doing her vitals. Then she stopped talking. And her heart rate went bad. They called a Code Blue and brought her back. Then they called Dad (and he called me- see above). Then she said that Mom went again and they were working on her right now.

Dad said: "You can stop. She had a 'no code' on her records."

And I lost my shit right there in the hallway. For those who don't know me, I'm the one who holds it all together. I have to be outwardly strong. When Jerry had his stroke, I handled everything and then I would cry by myself in the bathroom so no one would see or hear me. But I lost it right there in the hallway. I stifled my sobs with my hand (it was around 1130 PM and I was raised to be courteous) and someone handed me some tissues. They led us to the private waiting room down a long hallway. Dad told the nurse a few important things, I don't recall what really.

Well, I could continue with the minutiae of what happens when a family member dies in a hospital, but you can just assume that it was quick, precise and very professional. They gave us her glasses and the stuffed moose magnet that my youngest daughter brought back from college for Mom (Mom liked moose). She put the moose on the eraser board in Mom's room and I drew a girlfriend for the moose next to it.

Anyway, I've cried several times while writing this blog post. Her memorial service is tomorrow. Mom didn't want a funeral and she allowed for a "celebration of life". She was cremated and didn't want any kind of graveside service.

As for how this is related to fibromyalgia- well, it isn't really, but I figured this blog is where I've been recording how fibro makes me feel. And stress, emotional ups and downs, and lack of sleep will affect fibro. I'm feeling more tired than normal, but I don't hurt more than usual. Yet. I expect that if I do feel pain from this, it will hit after all the activity settles down.

I know this was long and of course its worrisome, but there is no need to worry over us too much. There have been just as much laughter as there have been tears. We're a practical people and we soldier on. And we're there for each other. Next week, Dad and I are going through Mom's stuff. He wants to donate her clothes and anything else usable to a local charity that gives clothes to people who need it (the name of the organization escapes me at the moment). Mom has an Alaskan gold nugget bracelet that I think I'd like, I'm going to ask him about it tomorrow.

316 of 365/2- I never wanted to do a photo of the day like this...

Wednesday, December 21, 2011

Strange Signs of Fibrofuckingmyalgia

My intent with this blog was to share the life I'm living with fibrofuckingmyalgia- hence the name of this blog- because I wanted people who are experiencing this to know they're not alone. Even though it does little to actually help, it does lift the spirits a bit to know that there are others who are going through the weirdness that you are. I'm not out to share tons of links or suggest treatments or anything else- I just want you to know that you're not alone. You're not alone and there are other people living with the same crap you are.

I received an email today from "Everyday Health". And it included a very interesting and helpful link. Six Strange Signs of Fibrofuckingmyalgia (I may have altered the title slightly)

Since I'm fond of talking about myself- as this blog so clearly proves- I'm going to break this down by the signs...

1. Allodynia. This is where it is painful to be touched by another. Some fibro sufferers are cool with it and even get massage. Lucky them. I don't get much physical affection around the house, so I don't rightly recall when this started for me. But you know, if your significant other is working at the computer or something and you walk up behind them and rub their shoulders? Yeah, don't do that to me. Especially not today. I'm only upright and dressed because I have shit to do and that shit don't get done if I'm curled up naked under my fuzzy fleece blanket. Sorry for that mental image. Hey, you knew what you were getting into by reading my blog.

2. Sensitivity to fragrance. I don't really have this one. I also have allergies that I take 10 mgs of Loratadine every day for, so fragrances have to be really intense for it to bother me. I do have the sensitivity to the light thing and I wear sunglasses when I go outside, even if it's cloudy. And here I always thought it was because I was partially vampire. I don't know how one becomes partially vampiric, but I assume the type of vampire that I am partly is a chocolate vampire.

3. Fibro fog. Oh, if you have fibrofuckingmyalgia, you're familiar with this one. Mine usually takes the form of suddenly forgetting how to spell a word. You see, I'm one of "those people" who dislikes misspellings. I feel the urge to take a red marker to the people on the Internet and after correcting their mistakes, writing a big red "F" at the top of their Facebook pages. Also part of this- I forget small things, usually multi-detailed things. I hate that.

4. Paresthesia. I actually didn't know that this had a name. My fingers and hands constantly get all tingly/numb. And my right foot. The top of my right foot, near the big toe and the weird second toe all the way up to the ankle. It is a very off-putting sensation. Not exactly painful, but it damn sure isn't comfortable. As I type this, my middle, ring, and pinky fingers on my right hand are mostly numb. The index finger and the thumb are at that tingly-painful stage.

5. Lipomas. I have no idea if I have this problem. My entire body is a huge fatty tissue, so finding that needle in a pile of needles is kind of hard to do.

6. Excessive sweating. Psh. I'm also in the throes of peri-menopause, who can tell "excessive sweating" from a freakin' hot flash?

Today is a nine on the pain scale. My skin hurts, it itches, and my weird pinched nerve is pinched like it is stuck in a vise grip. You see, 21 years ago, the disabled guy was not disabled and he was deployed for the Persian Gulf War (that's the First Gulf War for all you kids who dozed off in history class and missed the twenty second discussion of the "three-day war" in 1991) and I pulled a muscle, resulting in a pinched nerve in my upper back. I did this by picking up my then-17 month old baby. She's twenty-two years old now. I don't pick her up anymore, unless she needs a ride somewhere and I'm driving. But back then, with this pinched nerve, I had to wear a sling for six weeks. Six weeks with one hand and a baby to take care of. Of course, the disabled guy lives with only the use of one arm and has for the last seventeen years. But this isn't about him, there is a blog for that. A lot like this one, but with way less swearing.

But now, I've got shit to do... but like any good chocolate vampire, I'll take a break as needed and self-medicate with Cadbury. Not that American crap, the real deal- Australian Cadbury.

Monday, December 19, 2011

There is no title I can come up with to convey my feelings...

I've been having a flareup for almost a week. I'll have a day where I feel somewhat decent, so I'll do things, like go to the store or go see my mom in the hospital. Then the next day, I can barely pull myself out of bed to put clothes on, much less do anything. Today is the second part. I'm exhausted, although I am sleeping. I ache. My skin is doing that fire-itch thing. It feels like the bones in my hands and feet are trying to escape through my skin. And I'm swollen.

The edema thing- we can't be sure that's fibro-related because it hasn't been a symptom that has been marked or whatever. I have no damn clue how they choose which symptoms go on the list, but I can say that I started having fibro symptoms in 2004 and it was at the end of 2004 I started to have issues with edema. Sometimes it isn't much of a problem- my legs get puffy and there's a dent where my boot was when I take them off. Then there are days like today, where my legs look like they belong on commercially recognizable mascot for a certain marshmallow company or that equally recognizable tire company mascot. Both are referred to as "Man" at the end of their titles. You know what I'm talking about, right? Yeah, you know you do.

So, for almost a week, it has been one day on, one day off of the crapfest. Today was so bad that I didn't even bother to put on "real" clothes. I'm wearing my too-big yoga pants that I usually wear in the mornings because I don't wear PJs to bed (also, when I work out, I wear these pants) and my giant blue shirt. That's how I describe it: "Hey, can you bring me my giant blue shirt?" and the person to which I'm speaking knows which shirt I'm talking about. I used to wear this shirt over a decade ago and it actually fit me back then. Now it is a giant shirt... the sole purpose of wearing it is for comfort.

I've been taking some daytime Vicodin on these bad days. Not for the pain so much, though. Because I can deal with pain. I've done it for years. No, I've been taking the Vike (as I've started referring to the Vicodin) to settle down these itch-sensors. It works. It doesn't eliminate the itching, but it does subdue the sensation enough for me to stop bitching out loud about it.

All I want to do is eat comfort food and curl in a ball. Except the comfort food usually has too much sodium and curling in a ball requires me to get up from this chair. And I'm not getting up from this chair.

Oh, is that Cadbury? Will you bring it to me? No? Jerk. Fine. The next time I get up, I'm taking that Cadbury and you can pry it from my paralyzed-with-pain claw-like hand. Remember, I'm hopped up on Vike... I have the grip of an angry elderly person.

Damn right you better back away slowly. Hey, while you're up, can you get me that Cadbury behind you?

Monday, December 5, 2011

The Whining today is laced with anger. And swearing. Lots of swearing...

My fibro has been kicking my ass hard lately. I did so well in the summer with losing weight that I had hoped to keep up that momentum. But its a lot easier to muster energy and work through the pain when there's something unusually rewarding going on. And no, I don't mean the jousters. Heck I only spoke to them for a few minutes at the end of the day. I mean the overall experience. Being "on" for the non-garbed patrons, talking with my friends, spending time with everybody. Even though I was in pain, I muscled through it and it was worth it. I had so much fun, took so many wonderful photos. And even though I know it will hurt again, I can't wait till next year.

But when the only thing I can expect at the end is more pain, I just can't get myself out that door to walk. I tried to by announcing my photos of the day would be taken out on my walks, but I couldn't do it. One day, I did fine. But the day after I was so sore that the pain brought tears to my eyes.

AND THAT'S ANOTHER THING... try explaining the pain after physical activity and have people say, "Oh, you gotta just work through it. Everyone feels sore after they work out." It isn't the same thing! I know the goddamn difference between workout pain and fibro fucking pain. Two completely different things! Workout pain feels GOOD. Fibro pain sucks the goddamn life out of you and you can barely sit up in bed, much less put on trainers and walk a fucking mile.

The utter exhaustion I feel every fucking day is different than feeling tired from working out. I don't lack motivation, this stupid fucking disease takes it from me. I goddamn guarantee you that I wake up every morning with an eager mental state. I'm a fucking morning person. And by "morning person", I mean whichever the time of day I wake up. But now I reach over and turn off my alarm and as soon as I sit up, the fucking pain starts to sap my energy. By the time I'm upright and in the bathroom- where my workout clothes are- I'm in so much fucking agony that I just want to go back to bed.

On top of all this, I feel sometimes that I've let people down. I'm sure nobody gives a damn about my stupid 365days photo project, but I did say I'd take photos from my walks. Even that couldn't help motivate me. I've thought about walking after I take my pain meds. That would be the one time I have no excuse for, aside from just not wanting to go walking that late in the evening.

As I sit here, at this computer desk, all my muscles feel tight. And no, stretching doesn't help. It makes them hurt more and it even makes them burn a little. And not that "push it to the max" workout burn. More like "fucking hell, I think I've pulled a muscle" burn.

I don't know what is causing this right now. Could be the weather changing, could be nothing. Could be this stupid fucking disease likes to make me its bitch and wrestle me to the floor and punch me in the arm till I bruise.

I'm just glad that I don't have the itching yet.