Tuesday, September 27, 2011

What fresh hell IS this- Oh yeah, its fibro...

I got used to having those really good days. I'd forgotten how good I could feel and shame on me to forget that this disease is a fickle little bitch. I'd like to use another word, but I'm not British and the British use it so much better than I do. I know, I know- a few days ago (a week? I don't even know) I did a post complaining about how fickle this disease is, but I started to feel better and then I forgot again.

We all know a few of the triggers- stress, lack of sleep, physical exertion. I don't think I've been stressed and I know I haven't been physically exerting myself. I also know the weather has been changing like a PMSing fifteen year old (oh, don't get offended. You know damn well a fifteen year old with PMS is a fucking terror). I haven't slept well for a day or so because the dogs kept waking me up. They don't like it when I make duct-tape-muzzles. (OH PLEASE! You know that was a joke too. I'd never duct tape my dogs. That's what zip-ties are for. THAT'S ANOTHER JOKE, I'M ALL-CAPS-ING SO YOU KNOW I'M SERIOUS!).

Lack of sleep has given me the all-over pain. I feel like I've been thrown from my imaginary horse. I'm going to name my imaginary horse... Ol' Number Four. I drew a comic strip in the seventh grade with a talking horse named Ol' Number Four. He was a smart ass and wouldn't stay in his own little panel square. He was also a blue Appaloosa. And by "blue", I mean, actually blue, not the horse-color blue. I used a blue colored pencil. I also drew him in the style of my five year old self. Back then, my horses looked like long-necked dogs in need of orthodontia. 

I've gotten off track, but Ol' Number Four was a racehorse and even though he never stayed in his own panel squares, he won a few races. His jockey's name was Mark Book. Yeah, I was eleven when I started the seventh grade, what do you want? Shakespeare?

Back to the fibrofuckingmyalgia (the actual name for this disease). My all-over aching was killing me yesterday. And I've got this pain in my right thigh muscle that feels like Ol' Number Four kicked me after he threw me off his back. Ungrateful blue spotted horse. And then we have the weather changing. The weather flared up my arthritis- my right hand was in a painful claw, with the hot, sand-grinding pain radiating from my knuckles down my fingers and down to my wrist. Nothing would make that go away.

With that change in weather, we got humidity. And that triggered those thousands of microscopic spiders with the unshaven legs. For those who are just tuning in, I get this under-the-skin itching that feels like thousands of tiny spiders with hairy legs trying to crawl their way out through my pores. And because its under the skin, scratching doesn't help. In fact, it usually hurts because when my skin itches that way, I'm usually also sore and scratching at my skin just makes the muscles ache more.

Two things are happening this week... no wait, there are maybe four things happening. They're not stressful, so just back that truck up- "Oh, Patty, you just said you weren't under stress, but you've got stuff happening..."  Slap that one in reverse.

This weekend, I have the last ren faire of our season. Its a small, two-day faire in Illinois. Ceej is coming home from college to go with me. Monday is my birthday- 42, thank you very much. I'm the answer to life, the universe and everything (NERD!). And on Tuesday, my dear friend, Shawn, will be arriving from Australia. AND the next day, we're going to where Ceej and Kat live to see them, because they live in the same town and go to different colleges. I don't even know how much this will affect me. Effect me? Whichever. But I know that while Shawn is here, he'll want to go to Milwaukee because they have rockin' awesome museums there. Last time he was here (a year and a half ago), I was still four months away from my proper fibro diagnosis and this blog was about my knee scar, Fronkensteen.

I'm pretty sure I'm done bitching for now. My right hand is screaming a symphony and is surprisingly in key with the itching in my arms and legs (its localized there). But, I'm going to leave you with this...

There's a website called Fiverr where people will do a service or give you something or whatever for five bucks. Over on Regretsy-dot-com, a guy named Sam Cornwell was discovered on Fiverr. This was where I first found him: "My Fascination with Fiverr Continues"... it continues, because previously, April discovered Dancing Dror. We broke him. Not on purpose, but with all his orders, he injured himself somehow.

But, it was after I saw this post on Regretsy, that I decided to order myself a Sam Cornwell video for my birthday. I ordered the five-dollar version, which is a handheld camera and not quite so polished-looking. But, what I got instead was fucking art. (I did give him a "tip" for the extra work he did- which you should do even if you get the five-dollar version). I gave him our names (me and the Disabled Guy), told him of my nerd behavior, the disabled guy's NASCAR obsession and that this was for my birthday. The core topic I wanted him to address was the Disabled Guy's insistence that photography is not art. Guess what? Sam Cornwell is a photographer.

Language is not safe for work. But enjoy.

Sunday, September 25, 2011

Thirty things...

Over on the website But You Don't Look Sick, I stumbled on a blog post and it turns out, I'm a week late. But I'm doing it anyway. After all, the article stated "prominent bloggers were asked..."  I'm in no way "prominent", but I liked the article and I'm going to do it now.


30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Fibromyalgia. But that's not all. I also have some arthritis issues, tendinitis, bone spurs (both in my feet),  I've had my knee replaced, I have hypothyroidism, I'm in the throes of a hellish peri-menopause, and part of the fibro is Raynaud's Disease (or "syndrome" or "disorder").

2. I was diagnosed with it in the year: 2010. June 27th, to be exact.

3. But I had symptoms since: At least 2005. But the more I learn about the disease, the earlier I can recall symptoms. The first scary ones I recall were at the end of 2004. But if I look back, I can see other things that could be attributed to fibro.

4. The biggest adjustment I’ve had to make is: coming to terms with the fact that this is forever. I will have this disease for the rest of my life and I have to learn how to live with it.

5. Most people assume:  that I exaggerate my pain/other issues. I don't. But I spent more than five years playing them down because I didn't want to whine. When I got the official diagnosis, well, I stopped. Now I talk about it. To anyone who wants to listen (or read).

6. The hardest part about mornings are: getting upright. I used to just jump out of bed, hit the floor and out the door for a four-mile walk. Now I'm just glad I can get downstairs.

7. My favorite medical TV show is: I don't have one. I used to like "House", but not in a while.

8. A gadget I couldn’t live without is:  Can we call this computer a gadget? I get more support and concern from my friends who live on the Internet than I do from the people I live with.

9. The hardest part about nights are: Staying asleep. I can fall asleep, but I don't always stay that way.

10. Each day I take:  A lot of pain meds at bedtime. Just so I can get up the next morning. Some days are good and I don't think I need the Vicodin at night. But, the next morning, I'm like a lump of concrete. The Vicodin helps, but it doesn't kill the pain.

11. Regarding alternative treatments I: I graciously accept advice, but I will probably not try the alternative treatments. In the five years leading up to the diagnosis, I tried everything. And when I say "everything", I mean "everything in my realm of reality" because obviously, I can't afford some of the alternatives.

12. If I had to choose between an invisible illness or visible I would choose: I honestly do not know how to answer this one. I've lived my entire life with an invisible problem (hearing impairment- I was born deaf in one ear). I wouldn't know what to do if I had something visible.

13. Regarding working and career: I've been a stay-home mother and wife most of my adulthood. But I recently started to do photography again and that is a lovely distraction from the pain. If you can find something that you enjoy doing, then nothing will stop you from doing it. Just ask my friends who were bombarded with my photos from this summer.

14. People would be surprised to know:  That when I reach the point where I actually speak to you about the pain I'm in- it has reached a level that makes me want to cry. If I joke about the pain, that's because I don't want to start crying about it.

15. The hardest thing to accept about my new reality has been:  That its real. Its right here and there's nothing I can do about it but cope with it.

16. Something I never thought I could do with my illness that I did was: feel good again. When I started to have so many good days in a row that I forgot when I'd last taken daytime pain meds, I was shocked. So shocked I did cry. Tears of joy, which are way better than tears of pain and frustration.

17. The commercials about my illness:  Are asinine. They make it look easy to get diagnosed, to get treatment, and the ridiculous script: "I learned that there are nerves connected to our muscles..." Really? You just learned that? Wow, your basic science class didn't teach you a thing.

18. Something I really miss doing since I was diagnosed is:  Well, I stopped doing it about four years before I was diagnosed- walking and yoga. I used to walk four miles a day and do a lovely little yoga routine.

19. It was really hard to have to give up: Doing things with my kids. We spent several summers doing things like going to museums and festivals and such. It was a lot of fun. I even got a bike and we'd go biking on the trails around town. The slow downhill progression started that winter of 2004/05. I haven't ridden my bike since.

20. A new hobby I have taken up since my diagnosis is: The hobby itself isn't new, but I've expanded it greatly. Photography and going to the renaissance faire. Now I do hundreds of photos a week and this summer I had a season pass to the Bristol Ren Faire. Both things are fantastic, they sometimes hurt like hell, but they're also worth it.

21. If I could have one day of feeling normal again I would: Need a time machine and I'd go to New York City with my youngest daughter. She went to NYC in March of 2011 with the high school orchestra. I would have loved to have gone along as a chaperon.

22. My illness has taught me: Who really cares about me.

23. Want to know a secret? One thing people say that gets under my skin is: Being dismissed as melodramatic or when someone says: "My [insert someone here] has that, she takes [insert random drug or alternative therapy here] and she's FINE!" Good for her. I'm sure she is fine. How often do you see her? Oh, once a year, huh? Well, how is she the rest of the year then?

24. But I love it when people: Understand or accept without judgement. There are still a lot of people who think fibro is a "fake" disease.

25. My favorite motto, scripture, quote that gets me through tough times is: I honestly don't think I have one.

26. When someone is diagnosed I’d like to tell them: Good! Now you can get some help!

27. Something that has surprised me about living with an illness is: Having taken care of the disabled guy, nothing has surprised me about my illness.

28. The nicest thing someone did for me when I wasn't  feeling well was: Little things. My kids were all teens/adult-aged when I got the proper diagnosis. And even though they acted like it was a big deal (what isn't to a teen?), they still helped me with things like putting away groceries or carrying heavy things, taking the dogs out (we have a lot of dogs and no fenced yard, so they don't go out without a human). My friends have done little things for me as well- even something as seemingly small as a compliment makes me feel better. I was moved to tears by friends this summer.

29. I’m involved with Invisible Illness Week because: Well, I wasn't really. Had I known about it then, I would have done this a week ago. But, it would have been for the same reason I started this blog. To let other people know that they're not alone. And even if it feels like you're alone right now, there are others out there, like you. And knowing that you've got someone, somewhere who understands how you feel- well, that helps. A lot.

30. The fact that you read this list makes me feel:  Grateful.

Saturday, September 17, 2011

One of the things I hate about this stupid disease

Things are going along swimmingly, I suppose. I'm lucky enough to have gotten that elusive diagnosis which means I'm getting treated for it, and right now, that treatment is working. I am having many good days in a row, which is nice. But the one thing I hate about this...

How fickle is this stupid disease? I mean, why can I be perfectly fine one day- so fine that I can literally stand for hours and even run the length of the Bristol tilt yard and only be a little bit out of breath. And the next day, I'm so sore that I can barely get out of bed?

Okay, so there is the whole point of "well, dumbass, you just said you ran the day before..." I suppose that's true. But what about days like today? I didn't do a damn thing yesterday aside from my usual wandering around inside my house and out onto the back deck with the dogs. And today, I'm so bloody exhausted I can barely stand up. And I ache. Every muscle is hot and angry. I feel as though yesterday was a day at the faire, except I'm not still smiling about having a good time like I did on those Mondays and Tuesdays following a faire day.

This is one of the things I hate about it. Feeling good for a few days and then having the next day slam into me like a folding chair thrown by an oiled-up,  overly-steroided-up guy in tights. And this whole thing seems to hit  on days when I have to get up and leave the house. You see, that's what this blog post really is- a procrastination device. If I stay here and write this blog, I don't have to go to the store. Except that I need to go to the store and I will have to anyway when I'm done with this. But, as long as I keep typing, I can stay seated in this chair with the ridiculous wheels on the bottom and rest my wrists on this little neoprene pad with seemingly 3D water droplets on it. And when the disabled guy comes down and says, "I thought you were going to the store" I can say, "I had to write this blog first." And then he'd ask: "It isn't a blog about me, is it?" and I would say, "No, this one is about fibrofuckingmyalgia" and the problem there is that now it is kind of about him, because I just mentioned him.

I'm fully dressed, by the way. I managed to get my jeans on, my shirt, my not-shiny-anymore red Docs. But still, I'm here. Typing and typing. Things ache and I'm hungry. You shouldn't go to the store while you're hungry, but I'm going to anyway. Plus, I keep stopping while typing to look over my shoulder at the TV. There's a marathon of "NCIS" on USA right now. I'm not a huge fan or anything, but you know, it isn't a bad show- as far as these silly shows go.

I don't think I can drag this out much longer. There's a double-edged sword when it comes to fibrofuckingmyalgia. When you're this physically and mentally tired, you need caffeine to get through it. But the caffeine- if you drink too much of it- can exacerbate the fibrofuckingmyalgia symptoms. Is that even a "double-edged sword"? Did I mix up my metaphors? Is that a metaphor? When did this become a grammar lesson? Is this a grammar lesson?

No, this is just a really bad excuse to keep from dragging my significant ass to the store. Although, that ass is less significant than it was before. Seven percent less significant.

Oh, look at that... this suddenly became a bragging blog. And because of that- look what I made yesterday in Photoshop with a photo I took- also yesterday.

Poster for a school library

Neat, huh? My photo, someone else's quote. I sent her the high-res version so she can get it printed however big she wants it for the school where she works as a librarian.

But yeah, I really hate this fickle stupid disease.

Wednesday, September 14, 2011

The end of the Bristol Renaissance Faire

I've been putting off writing this blog. Partly because I hurt so much last week that I didn't want to do it and partly because by writing this particular blog, it really does mark the end of the season for me.

Now, if you know me, I'm all about the comfort. I sit down as much as I can, I don't get up if I don't have to. It took me a few years to reach that point, but I evolved and it became normal. "I'll go if I can sit down" became my mantra. And the ren faire has plenty of places to sit down and rest. I quickly got the joust down and chose a seat from where I could take the best photos I thought I was capable of and for seven weeks, that's what I did. I sat in the same set of bleachers, in nearly the same seat every time.

Then, one of the jousters had to leave to go to another faire. And the Master of Arms was taking his spot- handing over his job to a lovely woman who went by the name Lady Gwendolyn. Also, Amadeo told me to start the fan page for his character, so I did. And then I somehow coerced Sir Gregory into it as well and I started his fan page (if you go to Texas Ren Fest, you'd know him as Otto Von Dusseldorf, the German knight). So, I got up from my seat. I would start on the opposite side of the tilt yard- in Gregory's section. I'd take a bunch of photos of him during his intro speech and then, literally, run to Mauldron's section (which was on the same side, just the opposite end). I'd stand there at the gates and take as many photos as I could. I had to get what I could for Mauldron's fan page! This was also the first time I'd seen him joust in two years. I was quite happy about that. And he seemed to be having a lot of fun as the bad guy. But, I discovered, standing by that gate, I could get amazing photos of them all. Oh, because I shared those two pages, here are the others- World According to Mauldron (the first page I ever started), Sir Maxmillian the Jousting Earl of Braden, and Sir Edgeron of Aquataine. I'm not an admin on those two pages, but I upload a lot of photos on them.

And I did get those amazing photos. I'm just going to link you all to the album on Flickr of the final weekend jousts, because I took hundreds of photos. Hundreds. So many awesome photos. And I told myself that the pain I was in and would be in for days- was worth it. And it was. And that pain was exquisite. It surpassed a level of pain that I can even describe. I said that to one of our friends at the faire and he hugged me.

Here's the album of the final weekend on my Flickr. I took over four hundred photos of JUST the jousts on closing weekend... enjoy that.

And I know you're asking yourselves- why the hell would I put myself through all that, knowing how much it was going to hurt. Because I love those guys. I love the faire and the people who I know from there. But this group of Hanlon-Lees Action Theater, they're special. Mauldron, Edgeron, and Gregory- they were in the very first joust I ever saw. It was that joust that made me fall in love with the joust. Their characters were awesome (even if Gregory was going by some other name and filling in for who I assume was Amadeo- because he left this year on the same weekend) and the action was great. I remember sitting in Gregory's section, watching the horses and the fighting and the action and the sounds of armor and the sounds of lances hitting shields and thinking how fucking grand the whole thing was. My photos of that first joust are horrible. It was five-and-a-half months after my knee replacement surgery and I was so completely wasted on Vicodin (I took two pills every four hours) that I couldn't remember anyone's name. But I knew I loved it.

It isn't just the jousters I love. I know their families too and their kids are awesome. The squires are cool, too. One of them acts like we annoy him, but we know he likes us. (he left with Amadeo- where it turns out he's jousting in Massachusetts).

And you're saying, "That's a nice, long-winded answer, Lady Smelly, but it didn't really answer our question." Firstly, I was Lady Smelly three or four times this year- I lost count.

Like I said, I love H-LAT and I approached the photography with the same thinking I did when my son was active in his martial arts. Everybody takes photos, but nobody ever shows them to other people. I mean, I took photos of all the kids I knew from my son's academy when they were in a tournament. I'd get copies made (this was way back in the olden days of film cameras) and give some to the academy and some to the parents of the kids. I have no idea how many photos were taken of my son during this time because nobody ever gave me any prints. After spending an entire season at the faire- and having my photo taken countless times (sometimes by people asking, sometimes on the sly)- I have yet to see a photo that wasn't taken by a photographer friend. And a few of those people have my email. I know this, because I gave it to them.

Turns out, that's pretty much the same thing for the people who work at the faire. Countless photos but they rarely get to see any. I already considered myself a friend of Mauldron and Maxmillian. It wasn't so far of a leap to befriend the others. And as Mauldron said once- eventually, everyone meets me. He said that to an old college friend (and his wife) of his who came to the faire. They sat in front of us in Maxx's section. Big shocker that I talked to them, huh?

For all my pain and all my work, do you know what I expected in return? Nothing. I know the guys appreciated what I was doing and they'd tell me so. And Maxx even picked on me out of character and that was his way of saying thanks. I gave him two CDs with all the photos I had taken of him up till the seventh week. And he teased me in front of people I didn't know. And said that I took amazing photos... I'm going to lose it and get all weepy if I keep going.

And if that wasn't enough...

Mauldron told me to be sure I was there on closing day- like I wouldn't be, right? He gave me a print of a medieval knight on horseback, being led by a squire. Its stunning. And they all signed it. And I cried. And if I keep typing about it, I'll cry again. There's a photo of it in that link.

I took a week off after that final, three-day weekend where I spent a majority of my time standing and walking. I stopped hurting sometime around Friday, but following a relatively decent weekend, the fatigue set in on Monday and I've been battling it all week. I'm still exhausted today. The weather's changing and that doesn't help. But, I intend on walking again, for exercise. I think I can handle a half hour to an hour every day. After all, I survived ten-plus hours every Saturday and Sunday for nine weekends in a row.

And while I'm sad that Bristol is over and I miss my friends (not just the jousters), I have one more faire to go to... Stronghold Olde English Faire, the first weekend in October. I wasn't sure if I was going to go or not, but on closing day as we were hugging our friends and leaving, everyone kept saying, "We'll see you at Stronghold"... so yeah, I'm going.

And I'll probably hurt a lot from that, but I won't care. Because I love faire and I love my friends. And I refuse to let this fibrofuckingmyalgia ruin it for me. And now, I leave you with this...

Me with Sir Maxx on August 27th. It was Steampunk Invasion weekend and I was dressed in a very lame Steampunk outfit. (the goggles and hat were given to me by awesome friends). During the parade, he did the same thing he did to me the previous week. My steampunk outfit was maroon and black- which are Mauldron's colors. I called out: "I love you, Sir Maxx" and he'd turn away- "No! Don't talk to me! You're wearing another man's colors!" (he loves me, I know he does).

195 of 365/2- Me and Maxx...

I have no idea what he's doing here, but this was August 28th.

196 of 365/2- Sir Maxmillian does humor me with these photos

Mauldron told me that when he saw the photos of me with Amadeo, "There's no way I'm going to be outdone by [Amadeo's real name]."

202 of 365/2- Sir Mauldron says he will not be outdone by Amadeo

This is Lord Darius. He's a jouster, but he was injured earlier this year and has been recovering and now squiring. He can't wait to joust again. He's also a cyborg sapien like me (well, not LIKE me, but he's got metal body parts like I do).

203 of 365/2- Lord Darius!

The last 365days photo taken at the faire. I titled this one: "How much do I love this man?"

204 of 365/2- How much do I love this man?

And, this... this is the very last photo I took on the very last day at Bristol Ren Faire, 2011.

The last photo on the last day