Tuesday, February 19, 2013

I should know better than to jinx myself

Lately, because our weather has been so completely insane, I've been waking up at a 7 or 8 on that pain scale. I take my morning thyroid pill (by itself, because a million years ago when they put me on it, they said take it in the morning on an empty stomach) and then I take my muscle relaxer (around 30 to 45 minutes later) and an hour after waking, I take the rest of my "stay-alive" pills (some blood pressure meds, allergy pill, asthma preventative, and vitamins). And I take a couple Vicodin.

Then I get really tired and have to go lay down. (not always, but more than I'd like, so I often times will fight that urge to go collapse on the bed I was just in about an hour and a half before).

Today was one of those days. I ended up back in the bed by 7 AM (I get up as close to 5 AM as I can). When I woke up from the weirdest-dreaming-nap I've had in a while, I was okay. I felt a bit stiff, but it was nothing a hot shower couldn't... well, "help" isn't the right word. Let's just say the hot shower didn't make things worse.

I went on with my day. I ended up vacuuming the living room. I had to clear the snow and ice off my truck because I had to run to the post office. We had rain and 50° Fahrenheit yesterday and then the temps dropped drastically and I woke up to several inches of snow and ice and 11° and wind chills in the negatives. So, I vacuumed and I said: "I don't feel too bad today." I did, I said it out loud (and that's where I jinxed myself).  Then cleared off my truck. I went to the post office. I came home.

And that's when today decided to roundhouse kick me in the back of the face. It started in my legs and feet. My feet are killing me today. And my legs got sore. Then my large muscles started to tighten up and it felt like they were pulling on the joints they were closest to (they still do).  Around 430, 5 PM, I went upstairs to lay under my fleece blankets and hopefully stop this flareup from becoming a bad one. An hour later, it was no better. And now I'm downstairs, having taken my usual nightly dose of Vicodin about a half hour ago. The muscle relaxers come any time (probably after I type this).

So, what did I do today?

I vacuumed the living room and I went to the post office. And that wore me down and kicked my teeth in. That is so not fair. I was having a good day too. And the worst part is that I still have to eat dinner. And that means I have to get up to cook something for dinner. I don't want to get up and cook something for dinner and I've taken three 5/325 Vicodin on an empty stomach, so I can't drive to get myself something. And I'm home alone.

Well, not entirely alone. But the dogs can't reach the pedals in my truck and I'm pretty sure that all the fast food places around here don't speak "Dog".

"Hullo? Yes, I would like a number 14 combo meal with extra Milkbones."
He got curious about the whirring noise from the lens

Thursday, February 7, 2013

And I blather on endlessly yet again...

Over on the Facebook, this awesome and wonderful lady posted a link to this article on Squidoo about being chronically ill. The writer talks about being chronically ill and battling with the pain and leading a "normal" life. She even went to the Bristol Renaissance Faire and in that article is a photo of her with one of my faire family, Raymond. He's dressed as a gnome.

But, that article touches on a point- how do people with chronic pain or some other chronic illness do normal things? I'm lucky in the sense that my issue is merely physical pain. I can't speak for anyone who has a mental illness that screws with their life, I can only speak for the pain.

I get asked, mostly during the faire season, how is it that I can go all day at the faire with the walking, standing, heat, those clothes, the heat, the hills, the gravel, the heat, the dust, the sun, did I mention the heat?

The people who ask me usually don't live with, or know anyone who does, chronic pain. The ren faire is my one thing. I survive my day at the faire by taking a lot of Vicodin. I take it on a schedule so I'm never without Vicodin in my body. (except for that one day)

The faire also has a lot of places to sit down. And if you're nowhere near a bench for resting, there are stages and shows all over the place where you can sit in the audience. That's how I caught the Barber-surgeon presentation a few years back. I just needed to sit down and rest and the show was about to start.

So, we have extra pain meds and sitting. Lots of sitting. My pain, also, gets to a point that remaining standing is the only thing I can do, because staying upright is just easier than sitting down and trying to get back up again.

The most important thing that helps me cope with the pain at the faire is my friends. The people I know there are the most amazing and supportive people. There are the ones who continually check up on me (and there are others like me, they also check up on them). There are the ones who are amazing and funny and help me forget how much the pain sucks. And they never cease to surprise me with their understanding. More than once- and I admit, the reason it surprises me is that they were men (an explanation after this paragraph)- someone said, in reply to something I had said: "Yeah, but you have [fibro/that pain thing/chronic pain]..." and they weren't being sarcastic or judgmental. They were genuinely aware of this stupid disease and the amount of discomfort it causes people. The awesome lady who posted that link that set off this blog post said to me that I was the most cheerful person she knew with this stupid disease (that's my word- stupid- not hers). And that's part of the thing... I can't let the pain win. I can't let the pain make me miss a day with all those people. If I wake up on a faire day, my motivation to get out of bed and put on those (surprisingly comfortable) clothes is that I get to see those people. And while most of them are playing characters, they still mean it when they ask me how I feel. Plus, they're hysterical and they say laughter is the best medicine. And if laughter is the best medicine, then the ren faire is the best pharmacy.

Now about that "surprised by the men"... I've been married for over twenty-six years. Eight years into the marriage, he became disabled from a stroke. You've all heard the story. He was twenty-eight and had a massive stroke that left him paralyzed on his right side and with speech and communication disorders. Part of those "communication disorders" is that he has trouble expressing emotions properly. He reacts poorly to serious situations. The best example I can give is when I slipped on the ice on our back deck and tore up my knee (in March of 2006). After I iced my knee for 45 minutes, I used crutches and went to the scheduled parent/teacher conferences. I dropped the kids back at the house about an hour later and told them to tell him that I was going to the ER for my knee. When I got home hours later, he had cleaned the entire bathroom. Why? Because he thought it would be easier for me on crutches. THAT was his concern for me. But of course, he didn't say that and he did absolutely nothing else to help me. He couldn't express himself, so he did what he thought was right.

He also doesn't believe that I'm in as much pain as I am. He thinks I exaggerate it. I've mentioned this before and I've even mentioned how I thought he was "getting it". He's not. He doesn't get it. He doesn't understand how I can go one day almost fine to not being able to move the next day. He has no grasp on it and has no desire to learn anything about fibrofuckingmyalgia. He doesn't care about the peripheral disorders that are associated with it (Reynaud's, which is merely annoying and not terribly painful; neuropathy in my foot, which alternates between tingly numbness and outright agony). When I try to have a conversation with him, to get him to understand what I go through, he tunes me out. Or worse, tells me: "I know you're in pain, you TELL me ALL THE TIME."

So, when those male friends actually spoke with understanding, it surprised me. Because I forget that the rest of the world isn't like the person in the other room watching "Person of Interest" right now. For the record, it surprises me when women speak that way, too, but not to the degree that the men do.

Let's end this on a good note. Because this was not at all fun or funny. Here are two things that happened to me this week... two awesome things.

The Superstrobe Sunday Lighting Workshop  where, on Superbowl Sunday, I drove to Chicago and got to spend hours with some of those wonderful people (and a few new ones) that I mentioned up there.

And, the Maxx Empire Naked Mask Project. My right hand and fingers were in agony when I got done with the little details, but it was worth it.

And as of right now, we're 96 days till the Janesville Faire and 148 days till Open Wide The Gates!

Bring it on. I'm totally ready for it! Wait... We're only three months from the Janesville Faire? Dammit, I still have so much sewing to do! I better get to work on that!

Tuesday, February 5, 2013

There are some questions about this stupid disease that I'd like to answer

I was reading an article that was linked on Facebook by one of the many fibro pages I follow. They were all cool with some of the info, but then realized the website and article were sponsored by a large brand name medication aimed at fibro sufferers. That sort of takes away from a few things. But, the first part of the article asked a few questions and I want to answer them for you. Because I like you and I think you like me and because you're reading this, so you're expecting me to write something worthwhile or at least, you know, related to fibrofuckingmyalgia.

How did your fibromyalgia begin? Suddenly or slowly?  Mine started slow. I thought I was just getting older. My teen years were spent marathon cycling around Anchorage, Alaska and whatever was within a 15 mile radius of the aforementioned city. When I left Alaska for the Always Brown Kansas (brown in the winter because it rarely snowed and brown in the summer because it was so freakin' hot), I stopped cycling. There were no bike paths in the area and I didn't feel safe riding on the side of the road. I'd also injured my knee (the first big injury) shortly before leaving Alaska, so I was still recovering.

So, as things started to break down, I thought: "I'm just getting older. Arthritis runs in my family. Oh, I suddenly feel the urge to knit and put bird feeders in my yard. YOU KIDS GET OFF MY LAWN!"

The aches and pains that came on were slow and not intense. I've had foot problems since I was pregnant with my second child (that child will be 21 years old in three days). While pregnant with him, my feet were uncomfortably hot. I rarely wore shoes. I also preferred to stand in the kitchen on the tile. I was a walking, talking, breathing, whining cliché. I was barefoot, pregnant, and in the kitchen. When I did actually wear shoes, I wore the cheap canvas things from K-Mart. (you see, kids, back in the olden days, K-Mart was like Walmart, but not quite as good. Not as bad as Big Lots, but close). So, I developed heel spurs and various -itis related issues (bursitis, tendinitis, arthritis).

In around 2003, 2004, those mild aches and pains started to become noticeable. I was pretty good friends with a divorced dad at the middle school and he would invite our family to do things with his- like a canoe trip, museums, that sort of thing. Day trips that were loads of fun for all of us. When we'd get home from these outings, I was always tired. I was always sore. But, I walked four miles a day and did 30 minutes of yoga every day. I shouldn't have felt sore from walking around the Milwaukee Art Museum.

I used to write a column for a now-long-gone website and one of my articles was a review about the terrible IMAX movie we saw at the Milwaukee Public Museum. While it was one of the funniest things I remember writing, I'm just going to share the end of it. After I said what I had to say about the movie (which was so boring that I dozed off), I said that I had to wrap things up because I was sitting at my desk with my foot in a bucket of ice because it was so sore. That was when the pain started to become noticeable and it started to interfere in my life.

I eventually had to cut my walking down from four miles to three. Then to two. I cut out the yoga. I was too sore, too tired, too worn out. When my walk dwindled down to barely a half mile, I just stopped altogether. After gaining some weight, my doctor ran some tests to make sure I didn't have anything else and then decided my thyroid numbers were "borderline enough" to adjust the dose of my thyroid pill. That helped a bit. I was ready to get out and walk again, having regained some energy. Then, March 3, 2006 (about a year after the museum visit and six or eight months of not walking), I stepped out onto my back deck and slipped on the ice, tearing my knee up (again).

That was the beginning of the three year saga that led to a total knee replacement and that knee replacement triggered a yearlong fibro flareup that was undeniably real. I had my TKR in March of 2009 and in late June 2010, I was officially diagnosed with fibro.

How long did it take to get an accurate diagnosis of fibromyalgia?  If you're still reading, then you know that serious issues started in 2004, very serious and undeniable issues in 2009. I'd say I had about four years of diagnosis problems. Looking back, I can see signs of fibro before 2004, but obviously I didn't know it was fibro back then.

What fibro treatments are working for you? I take Vicodin for pain (three 5/325 tablets at night, sometimes I take one or two in the daytime, but I don't like to and only do it if I HAVE to). And I take 30 mgs of Cyclobenzaprine a day. One 10 mg tablet in the morning and two 10mg tablets at night.

But, this past year's weather has been pure hell. The ever-changing weather (and I mean seriously changing: we had mid-50s one day and the next, we were in the single digits) has been kicking my ass six ways a day. For the most part, that mix of drugs has been working.

So, if you've read this far, I'm sorry this wasn't funnier- or at least, more entertaining. I'd dance for your amusement, but I have to go finish something I've been working on in the kitchen. It isn't a secret, but I'm not sharing photos till it is completely done and if I keep dancing for you, I'll never get it done. And you'll go blind because I'm such a terrible dancer, you'd gouge out your own eyes with a broken corkscrew to make it stop.