Monday, September 22, 2014

Death would hurt less...

I was going to put off writing this post till I had my Flickr photos up to date with the macros I've been doing since faire season is on its month-long hiatus (Closing Day at Bristol- Labor Day Monday. Next faire- Stronghold Olde English Faire, October 4th and 5th, then A Gathering of Rogues & Ruffians on the 11th and 12th. AND THEN Teslacon on November 7th, 8th, and 9th). I did a bunch of really cool shots of raindrops on maple leaves. The underside of the leaves cause an awesome beaded water effect, so I've been going understandably nuts with the macro lens.

However, with the final weekend photos and the wedding photos, I haven't been uploading macros to Flickr on a regular basis. I just checked and I have around 80 photos from September alone to upload. And honestly, I don't have the mental enthusiasm to upload 80 photos and caption and tag each one. Not today.

Not only am I stuck without fibro treatment- beyond the Vicodin and Cyclobenzaprine I've been taking for years- I also ran out of my hydrochlorothiazide (spelled that from memory!). I was out of refills and instead of calling in the automated thing, I just waited till my doctor appointment that same week and had them renew everything that needed renewing... except that I ran out before the refill came. So not only was I swollen as a reaction to the generic Effexor, I've been having the swelling associated with not having my much-needed water pills. (they should arrive tomorrow or the next day, according to the automated checkup I did today).

I feel like I'm being smothered in pain. My clothes fit weird because I'm swollen sort of all over, but not in a proportional way. I'm cramming swollen, flipper feet into shoes because it hurts more to go without shoes (and by "shoes" I mean super-comfy hiking boots). I've been wearing my largest, softest shirts and believe it or not, I only have a few days' worth.

Death would hurt less. I'm in hell. I started crying and I couldn't figure it out, till I realized I've been randomly crying from the pain. When I sit absolutely still, I have pain, but it feels more like a dull burning feeling in my muscles. Like I've overexerted my muscles and now my body has too much lactic acid in it. And sometimes my skin itches... sometimes it aches. And if I move, that dull burning ache turns into a searing, stabbing agony. Lifting a 20 ounce bottle of water hurts. Having a four-pound Chihuahua step on my leg in an effort to get over me to the cushion on the back of the sofa is like being stabbed with a dull, hot piece of metal. And that pain lingers. All that plus my wrists alternately or simultaneously feel like I've sprained them. I can't put any weight on my hands when I get out of this chair. You know, this office chair with arms on it so I can use them to get up easier than just sliding out of the chair and crumbling into a heap on the floor.

On top of that general feeling of "Living Hell", after I've sat still for a while and go to move, I sometimes have to actually move my legs with my hands so I can get up. My burning, aching muscles tend to stiffen up while I'm sitting still. Right now, in my office chair, my legs are going to scream like a heavy metal symphony when I decide to stand up. I'm also back to waking up every hour-ish at night. So, no sleep exacerbates the pain, the pain makes it so I can't sleep, so the lack of sleep exacerbates the pain, and then I can't fall into a deep enough sleep, and I spend my days in more pain because I'm not sleeping well, and when I do go to bed, I don't get restorative sleep, so I'm in more pain during the day.


Who the hell is Jane in this story? My doctor's name isn't Jane. (actually, her first name is Jennifer and I think she's the same age as my oldest kid).

The Disabled Guy is sick and tired (ha!) of hearing me bitch about it. I can't help it, though. I get up and somehow I'm supposed to function like a normal person. I put my clothes on and an hour later they're so uncomfortable that I have to change into my giant yoga pants... or get naked under fleece blankets. But you can't go to the store or post office wearing only two fleece blankets. And driving while on this much pain medication is probably not good either.

Now, I've had a few people ask me why I don't use compression stockings for the swelling. Because obviously, in the last nine years, I haven't tried EVERYTHING. I have doctor prescribed, fitted to my size compression stockings. And all they do is push the swelling up to above my knee and leave deep red marks on the backs of my knees. Oh, and since I had the total knee replacement five years ago, that super-tight compression stocking seam that lays across the bottom of the scar feels SO DELIGHTFUL!

Well... I took some photos. I wore my compression stockings for four hours the other day. And I took some photos... (with my phone, because I can't carry my camera and use both hands to drag myself up the stairs).

Here's my leg in one of the stockings (after about four hours). Yes, my leg is swollen above the stocking and my knee no longer has knee-like definition.

Oh, and guess what... my calf and foot still swelled up under that compression stocking. That line on my ankle is where the stocking cut into my swollen skin because I was standing/sitting with my foot at the normal angle that all humans (except ballerinas) stand.

Here's another shot- with more of my calf visible.

Nice, huh? And these were prescribed by a doctor. They measured my legs and everything.

Here's the other leg (the one that was photographed still in the stocking). Oh, and by the way, taking these stockings off was an experience in torture. As I rolled them down, it felt like I was scraping the skin off my bone with a dull Ulu knife.

One more shot... you can kinda see the line left at the top of my calf. Behind the knee, it was red and irritated.

And now you know why I don't wear skirts that show my legs. People say: "Oh, it doesn't matter! Nobody would notice!" I beg to differ, Sparky. Giant elephant legs attached to flipper feet with a huge scar down one knee... that's kind of obvious and difficult to ignore.

The first person who tells me that fibro isn't a real disease is going to get kicked in the crotch with a flipper foot. Think about it- the flipper foot is wider and bulkier than a normal foot. It will cover more ground (so to speak). Hippos are the deadliest animal... imagine a hippo with the ability to kill on land. Yeah... I might take a while to catch up to you, but I'm stubborn and you'll get tired.

I'm going to end this with the song that I've had stuck in my head all day.

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