"What does having fibro feel like?"

I've been asked that question a lot and I've answered it here on this blog a few times. Without looking up each individual post, I've likened the pained feeling to:

1. The early stages of a cold or the flu. The all-over aching and tiredness. That exhausting pain in your muscles that is so tender that the water from taking a shower hurts your skin.

2. Being hit by a truck/thrown from a horse. Same thing- all-over muscle pain, but with varying "hot spots" of more intense pain.

3. Being beaten with a pool noodle. All-over muscle pain and fatigue.

4. Lactic acid overload. That feeling you get when you lift weights and you feel like your muscles can't take any more, they're burning with the exertion.

And all of these things are accompanied with that mind-numbing fatigue that makes you forget things like: "Did I take my pain pills yet?" and "Why did I come into this room?", plus little things like phone numbers and your children's names.

The easiest way to explain it is as follows:

You know that pain you get the morning after you work out after having been lazy for a while. Your entire body hurts. Every muscle is tight and even the slightest physical movement causes the muscles in that area you moved to scream out a symphony of agony. Burning, intense pain that lingers for a few days. Plus, you're so tired because you decided to have a sauna and swim a few laps before leaving that gym. Now you're not only in pain, you're so tired that you keep reading the same line over and over again. Now you're not only in pain, you're so tired that you keep reading the same line over and over again. Now you're not only in pain, you're so tired that you keep... haaaa! I'm such an asshole...

So, have you got that idea in your head? Now, apply that to every single day. That's how I feel every single day. To mix it up, though, every so often my body increases the intensity of the pain- you know, just in case I forgot how good I had it with that all-over pain and fatigue. Sometimes, that intensity crank-up happens all over my body and other times, it happens in a localized area. Favorite hot spots in my case are my hip muscle- so it feels like I have a burning railroad spike being ground into my hip; the shoulder/upper back with the same type of grinding and burning railroad spike; and the hands/wrists/forearms. Those pains can come and go randomly. Some days, I feel as though my wrists have been sprained, only to have them feel fine hours later.

There you have it... how it feels to live with fibro.

And now here's some photos I took of my daughter and her boyfriend today. They were going to a wedding and wanted some nice photos, all dressed up, that weren't iPhone photos.


Kathy and Tyler (shot in their backyard)



Tyler didn't think this shot was going to turn out. But I like it.









Notice- she did not back away, she just braced herself for it.



Tyler wanted a "full body" shot of them in their nice clothes.

A new banner image...

Well, I figured since I talk about photography a lot on this blog and I've all but deleted my Pahz Photography blog... it was time for a new banner. Which is the same banner, with the text added.

I guess if we're going to be realistic, my title banner should say:

"Pahz Lives with Fibro and talks about photography, the renaissance faire, her feet, the dogs, mentions the cats now and then, even talks about the Disabled Guy and their kids, people she knows at the faire, that band she likes and does it all with various amounts of swearing and borderline and uneven humor." 

But that might be a bit much for banner text.

Pahz Lives with Fibro and talks about photography

I have a photography blog that I had to make private... I don't update it much... anyway, let's talk about this ongoing flareup and then I'll talk about photography. Because even though I've had this stupid flareup, I've been doing things, because I have to. Well, not "have to", more like "I want to do this so much that I will crawl across broken glass to do it!" and having a flareup is painful. Maybe not "crawl across glass" painful, but it isn't a roll in the daisies either (I sure hope that isn't a euphemism for anything provocative, because the last thing I need to be is provocative). Also, I feel like I should add: "& talks about Photography" to that banner.

Let's move forward...

The pain is one thing, you know... I can deal with the pain. I can stay off my feet or even starfish myself across my bed. I can take some pain medication that doesn't really kill the pain, but makes me not give a damn about it. But the exhaustion really kicks me in the teeth. It took me three days to do my Janesville Ren Faire photos because of the exhaustion. I took less than 300 photos on both days and I should have been through them by Tuesday.

So, the exhaustion just kicks me in the back of the face, like an angry Chuck Norris with nothing better to do than pick on a short, fat housewife. Now, if we combine the exhaustion with the pain, well... that just cranks the suckitude up to eleven.

During this flareup- this flareup that has lasted for approximately 41 days now- late in the evening, I start to feel a little better and I think to myself: "Hey, maybe this goddamn flareup is finally easing up..." But then when I wake up in the morning, I'm rudely and painfully reminded that no, no... this flareup is definitely not easing up. And if I'm feeling really good about it before I fall to sleep, I sometimes get awakened in the night by the pain clenching my muscles in its grip and giggling maniacally because I dared to shift myself around in bed. The mornings have been so bad lately that I can't find the energy or strength to pour a bowl of cereal. (Special K cereal bars are helpful).

So, I trudge on, because what else can I do? I'm on that bubble of "do I bother to call the doctor and get an appointment?" because that could take a few weeks, or do I just keep soldiering on because this is just a flareup and it HAS to end...

Now, in between all these random blogs of me bitching and whining my way along, I've had a few great weekends that totally made up for the terrible and painful weeks. I had the Bristol Pirates on the Tall Ship Windy on May 10th. It was an awesome day, filled with way too many stairs on the CTA, but I made it. I managed to keep up with everyone and not die from it. Not dying is always a plus. Because if I died while on the way to the ship, I would have missed out on taking those cool photos. A week after that, I had the Janesville Renaissance Faire- an event I haven't missed since it started nine years ago. And that includes 2009, when I had my knee replacement just a scant two months before.

Those two events were awesome. I had tons of fun, despite the pain. All the walking and standing really kicked my ass all over the place, but I still had fun. I also chewed down Vicodin like my life depended on it. I also sat down as much as I could (otherwise, there would have been way more photos at the Janesville Faire). But, nothing prepared me for the awesome day I had last Sunday. Sunday, May 25th, I drove down to Chicago (my daughter, Christine, and her boyfriend Casey, came along) and- like the Mother's Day shoot, I met up with my friends at one's apartment. From there (after the ladies completed their hair and makeup), we made our way to the Museum of Science and Industry. Once there, we met up with other photographers and a few more models (four photographers and six models) and we took over the old-time Main Street and had a little 1940s Film Noir-style photo shoot. It was so much fun, but dear sweet baby Jebus, I was in agony.

I don't think that second injection from the podiatrist is working for me. My plantar fasciitis seems to be flaring again, so on Sunday, I wore my Dr Martens with a slight heel, to take the pressure of that part of my foot. And at first, it was working. But almost as soon as we hit the cobblestone street of the Main Street display, all the pain I had was in my feet. The cobblestone made it hard to walk (I don't know how the ladies did it with their heeled shoes!) and I really wished I'd worn my regular boots. My heel would have been sore, but that would have been all that was sore (I think, anyway). We were all on our feet pretty much the entire time (we were there for HOURS). But dammit, I had fun and I learned a few things (photographically-speaking). My muscles were screaming every time I moved, but I still walked along as best I could. I stood still, holding my arm up in the air while I was being a light stand. I walked around, took photos and even caused one of the women to crack up while she was trying to pose all serious-like.

My feet seemed to be the source of Hell's gaping maw of fiery pain and my body aching like I'd just used all my muscles to hold a train over my head, but I wouldn't change my day. I had fun, despite the pain. I got to spend all day with amazing and beautiful people and three awesome photographers. And with all we did all day, only one person stopped to ask us what we were doing. When we said we were doing a 1940s Film Noir style photo shoot, they asked what for and I replied: "For fun, of course!" She didn't seem to believe us, but we also mentioned that we're all friends and some of us are photographers and some of us are beautiful people... so things like this happen.

So, Sunday, we left the house at 7 AM and returned around 830 PM. (I drove home in my sock feet because I HAD to get those boots off my feet) And in between were the most painful and exhausting hours I've experienced since my first week of physical therapy after my total knee replacement. But those hours were also incredibly fun and my photos turned out amazing.

So, fuck you, Fibro. Fuck. You. You caused immense pain, but I didn't stop. You caused me to disappear to the ladies room twice to control the tears you were forcing, but I still went back out there and took photos. So have a big middle finger and a hearty FUCK YOU, FIBRO. You suck, but you can't stop me from living my life. I spent four years of my life indoors and not doing anything because of my pain. I'm not going to do that again. Ever.

And now, because you knew it was coming- here are the photos from Sunday.
~The Link to the Whole Album~

And here's a selection of photos. And yes, you recognize the models from the pirate photo shoot and various other ren faires I've photographed and they are the same people who actually ask me how I'm doing and mean it. (some of the captions are mine, some are made up by Tabitha).

"Something didn't add up... this case smelled bad, like the docks at low tide, but he knew he couldn't turn back now..."



"That dame had gams that went all the way up, the way gams do and I knew I was a goner..."



"She pulled out her compact to pause the conversation and I knew I hit a nerve..." 



"She was right at home in the night. Her fear was a ruse. An act that I fell for, hard..."



You can tell that they're as smart as they are handsome by the way they use their glasses.



"She was waiting... and I had no idea I was the next one in her trap..."



"I knew that I could be straightforward with this dame. But she moved sideways and threw me off my tracks... I was hers and she knew it."



"I thought she looked like a postcard and in that moment, I knew I wanted her to stay just so I could look at her..."



"Those lips would be the death of me and I was ready for my funeral..."



"Martin J. Frobisher P.I. and his plucky assistant, his gal Friday, Antsy Drew..."

(do they look familiar? They should! You've seen them before!)



"I knew she was bored and like a cat with a fly, she was going to play with her prey. I was willing to be that prey..."



"She held onto her hat as the train picked up speed and I knew I would follow her no matter how far she went..."



"He was hooked, caught up in her web. Poor man was a goner and didn't even know it yet..."



Karen, casually glamorous-

And it goes on and on and on and on and on and on...

Yup, you guessed it, I'm still having this flareup. I counted the days and I'm at the end of day 34. Every single day is an effort to get out of bed, followed most days with a nap after breakfast. And I had several days in a row where the very act of pouring cereal into a bowl, getting milk, and then eating it with a spoon was too tiresome to complete. (this is why I keep some Special K cereal bars around).

In between all of these stupid pain-filled days, I've had obligations to fulfill. Payday errands, grocery store trips, doctor appointments, Mother's Day boat trip and the Janesville Renaissance Faire. And those days meant I didn't get a nap. But I soldiered on. I trudged through the pain and had fun (at times) and did my job (which was part of the fun).

Now, my usual "days following faire" are spent in this chair, editing my photos (I shoot RAW, in case you forgot or don't care), and not physically moving all that much. The pain is typical of two-straight-days-of-physical-activity, but this time around, the fatigue spin-kicked me in the back of the face. Sure, the pain sucked- the arches of my feet had bruises (still do) and my back and hips were just screaming in an off-key, drunken way. It took me three days to edit the photos that should have taken me two. (I shoot more at Bristol because of the jousts). I slogged through the pain at the faire like I always do- slightly whiny and sitting down as much as possible (but I did stand a lot too, because sometimes you have to). But sitting here at my desk, I was so mind-numbingly exhausted that I would sometimes doze off with my hand on the mouse (thank the photo gods for the "undo" option in Photoshop, AMIRITE!?). And I've felt hot. Like I'm slightly overheated for no reason. I have central AC. I never have to feel hot inside my house.

The weird thing happened today. We had- I'm sorry, this "we" is actually me and my youngest daughter (she'll be 21 in a month)- we had to go over to my dad's house and then to the grocery store. But, I also shampooed the living room carpet. And as we were walking out of the grocery store, I felt my Vicodin wear off. I could feel the pain come back to me in a wave from my feet all the way up. After that initial wave sucked the breath out of my chest, the burning pain settled into my hip and lower back. My hands and wrists have been extra annoying these last few days, too. (I needed to throw that in before I forgot).

Now, back to the weekend- which was wonderful, because I got to lace up in a steel-boned bodice and flounce around outdoors with other people wearing equally silly clothes and doing their own flouncing. Also, I was able to get myself a Mother's Day gift from my friend, Joshua. He makes jewelry and I got myself a necklace made of cognac amber and bloodstone with a gold and blue tiger's eye. It's more awesome in person (you can see the details in the stones, that's why). Anyway... the weekend...

The same thing that happened at the Mother's Day pirate ship shoot happened at the Janesville Faire. If someone asked me how I was, they meant it. They knew I was still in the middle of this stupid flareup and they weren't just being polite when they asked if I was doing okay.

OH- someone who shall remain nameless said: "Well, they're actors. They were probably just acting like they were concerned." And you know what I say to that? (I mean, aside from: "No, you shut up, Nameless person") I say so what? If they were acting like they cared, they were doing a damn good job of it and it made me feel a little better. BECAUSE THAT'S ALL IT TAKES SOMETIMES. Sometimes just knowing that someone believes you and gives a flying rat's ass about your well-being is enough. (for the record, I don't think they were "just acting", because they're good people, dammit).

But let me repeat that one bit- Sometimes all it takes to help someone feel better, even with physical pain, is knowing that someone cares about them. That someone believes them. Especially when you have an "invisible illness".  (In case you couldn't tell from the above two paragraphs, I live with a naysayer).

Now, just because I was AT the faire and I take photos, I'm sharing a few of my favorites. I don't care if I shared the link to the whole album up there. I'm sharing them anyway. And also, a video- of the sea captains on the water, where they belong.

Post by Patty Smith.

And now, some photos...

Anne-Drew made herself a beard of sponges. 



These are a progression...



Frobisher and Hawkyns kept talking and cracking me up. Thee Bluebeard finally gave in and laughed out loud too.



Then he composed himself and became stern...



And then THIS happened (this is my cover photo on Facebook now).



Anne-Drew and Captain Grace O'Malley



To the Point, the fight cast. 



A real life fairy and her daughter. 



A Day in the life... 



Bristol Buskin Frolic (two of many, actually)



This was To the Point on Sunday. Josh (on the left) couldn't be there on Saturday, so I told them to pose like they were fed up with him and for him to look smug.



Captain Sir John Hawkyns



Thee Bluebeard is shocked!



Captain Frobisher isn't listening to you.



Yes, you are seeing this correctly. That's the Disabled Guy at the Janesville Renaissance Faire with my sea captains. No, he didn't attend the faire. He came out to fix the treasure chest he'd made for them. And he agreed to pose for a couple photos. I had them all pose with their arms crossed and scowling, like he was. 

May 12th was Fibro Awareness Day

And I didn't post a blog about it because I was busy. And I didn't get to it on Tuesday, because I was busy. (I had a cardiac stress test at the VA hospital and I was gone from 7 AM to 4 PM. The last thing I wanted to do was concentrate on anything. By the way, the bruise progression from two failed IVs can be seen here and then there's today). And Wednesday, I was... well, you get it.

Anyway, here we are. I'm still having the same flareup I was bitching about a couple weeks ago. So, we're beyond what a "flareup" actually is, I think. Now, despite this goddamn flareup, I didn't let that stop me from enjoying Mother's Day. As most of you already know, I spent Mother's Day on the Tall Ship Windy in Chicago, with the "Bristol Pirates". That's just what we collectively referred to the group as, even though it isn't their official name. It was all the "sea faring" characters/historical people that could attend. Why was I there? Well, to photograph it, of course. And, here is the link to the Flickr album. I drove into Chicago, met up with Tabitha and Ansel at their home (and Josh, because he lives nearby) and we all took the CTA (public transportation) to Navy Pier. Along the way, we picked up a few more Bristolians. Bristolites? And at the destination, we met the rest of our party. And as you can see, it was so much fun.

I didn't let this flareup stop me. And because I wasn't one of the characters, I was in regular clothes. Jeans, shirt, and a thin cardigan. And in case you were wondering, there are A LOT of stairs involved when taking buses and trains through Chicago. I managed to do them all without falling down. And then I drove two hours home (it would have been 90 minutes, but TRAFFIC). And while on the ship, I was so exhausted that I could barely stand up, but I got the shots. I was a little wobbly on the ship, so I had to stand with a body part against a part of the ship (like leaning with one leg pressed against a bench or railing or something). And the people I was traveling with were wonderful. They didn't make me feel bad for slowing down the whole group. And when I said: "I'm on day 27 of a flareup", they didn't sigh and roll their eyes. (I was guessing on how many days it was, and it was pretty close to accurate). And they all agreed that after an entire month, it can no longer be called a "flareup". It is now a "spell" or "incident".

 I had an amazing time and the only thing I would change is the cardigan and jeans. It was warmer than I expected and I could have just done an over-shirt or even just worn a T-shirt instead of layers and if I do this again, I'll wear a skirt. (and my photos turned out really well- Ivan's were even better. If you see the photos of pirates on the CTA floating around, you know why. ).

Anyway, this blog post is supposed to be "my story". I'm not sure what I haven't already said about this stupid disease.

In late 2004, the edema started. It was "unexplained edema", then it was caused by the perimenopause. Eventually, it was called "unexplained" again. In 2005, my energy started to drop. It got so bad that I couldn't keep doing my four-miles-a-day walking. So I cut it back to three miles. Then I cut out my half hour of yoga. Then down to two miles. When it got down to one mile, I just stopped. It didn't seem to make sense to keep going when all I was doing was walking down the street and back. I started complaining to my doctor almost immediately. When the weight gain started, the doctor tested my thyroid. It was a little off and he adjusted my thyroid medicine. And it helped for a while.

March 3, 2006 was the day... I walked outside at 7 AM, to take my wooden cane to the garage so the Disabled Guy could sand the paint off. I was going to give it away. But that day... I stepped out onto my wooden deck and took two steps and slipped on the thick layer of frost. I STILL cringe when I think of the pain I was in when my knee went completely fucked. It was the beginning of the end.

Over the next 12 months or so, my VA doctor tested me for a slew of things. I had so many tests that I'm pretty sure I glowed in the dark when it was over. They ruled out everything. I had an incident with ibuprofen in the middle of the testing process that made us realize I wasn't able to use it anymore (it caused me to swell up so big that I lost feeling in my foot). And just around the time those tests were done, my doctor graduated. I liked him, though. He was a good doctor. (I used to refer to him as "Doctor Doogie" in my blogs because he was so young). Then, I had a woman doctor for a couple visits. She finished out Doctor Doogie's orders on some blood work and then she was gone. And I ended up with him.

Jerk Doctor is how he was referred to in my blogs (those blogs are gone now. Long story including a reinstall of an operating system). He kept telling me- as I was continually putting on weight- that "your knees would feel better if you would lose weight. You need to exercise." and not even five minutes later, while discussing the plantar faciitis and tendinitis in my feet: "You need to stay off your feet till they stop hurting." All the while, the pain I was having was getting worse. I thought that it was my joints hurting because my grandmother had rheumatoid arthritis. I asked about that- he said the test was negative. He had me keep food diaries- which I was totally honest on, I even measured salad dressing- and kept telling me to exercise and to not exercise. I brought up this weird disease- fibromyalgia- and he shot it down fast. "No, you don't have that. Don't even worry about it."

During this time, my knee never healed. I ended up walking with two canes because my other knee started to go bad. I was sent to nearly useless physical therapy. I was given two matching canes (which I named "George and Gracie") and I was given two knee braces that didn't work. In fact, they hurt a lot and left bloody dents on my thighs. And, after three years, he said: "We've exhausted all other options, so I'm going to give you a referral letter to see an off-site orthopedic surgeon." (he actually said: "We've exhausted all other options, so I'll get you that referral..."). Six weeks later, I got the referral letter in the mail and a month after that, I was inducted into the Cyborg Army.

Now, that massive surgery triggered a year and a half "flareup" and I suggested "the fibro thing" again. And again, he shot it down. So, one day, I printed up the list of symptoms. I marked off the ones I had (which was all but the "hair loss", "depression", and "decreased sex drive"), the frequency of which they bothered me, which ones could have been my thyroid problem, and I had two paragraphs of how my days "felt", pain-wise. I mean, it wasn't rheumatoid arthritis, was it? That was the only other thing it could have been. I went in, armed with my printed-up information (it was about four pages long) and I was ready to confront this Jerk Doctor with the info and dammit, he was going to do something about it!

Imagine my surprise when a young woman came to the doorway in the waiting room and called my name. Turns out, Jerk Boy had graduated and moved on. He didn't bother to tell me- like all the other VA doctors I've ever had- he just left. (I know I wasn't his only patient to be told the "exercise" thing- one of the lab guys was a patient of his and had the same problem)... so I presented this new doctor with my information. She read through my paragraphs and skimmed the list (which was color-coded!) and she asked: "How do you know it isn't rheumatoid arthritis?"

I told her that the Jerk Doctor told me the test was negative. She looked in my records (which are literally all right there on the computer) and said she couldn't find any test orders for rheumatoid arthritis. So she went back in the records. To Doctor Doogie's test results that were now four years old. Jerk Doctor didn't even test me for RA. He just parroted the older test results to me in order to shut me up. So, the first thing this lovely lady did for me was order a new slew of blood work. She also put a referral in for me to see the rheumatology clinic (because in the VA, they're in charge of fibro too, and if it was fibro or RA, I'd be sent there anyway). AND- she said she'd get me a referral letter to see an off-site podiatrist about the plantar faciitis. And the fibro... she said: "If it walks like a duck, talks like a duck, sometimes it's a duck."

Now... don't get too happy yet. As is the norm at the VA, the young doctor leaves the room to get some things approved by the attending. Then they come back into the exam room and tell you things about the prescription or whatnot they've just discussed with the attending. She walked back in the room and handed me the referral letter to the podiatrist. She handed the letter to me. The same letter that took six weeks to be mailed to me was literally handed to me. Which means that the six week wait was just another way Jerk Doctor was jerking me around.

Shortly after my diagnosis, I started this blog so I could whine and bitch and laugh my way through this stupid disease.

So, my advice to you is to keep trying. If you get a doctor who shoots you down- get a new doctor. (I didn't know I could do that at the VA. I thought it was like the Army- you get who you get and that's that). Keep asking, keep pressing. Take notes if you have to... because you need to be pushy to get results. This disease is real and it sucks. And you need to keep going.

And now, I leave you with some of my favorite photos from my favorite Mother's Day since the
Great Camera Cryout of 2012. (which, by the way, made THIS Mother's Day possible). Also- a shaky video of the Bristol Pirates actually working the rigging for the sails.

Captain Sir Martin Frobisher and Captain Grace O'Malley search for the train.



O'Malley delights in antagonizing Frobisher.



The Pirates search for transportation. (with John T. Hawser- we found him at that bus stop!)



And they meet some heroes of the Chicago Fire Department (the bus stop was next to a stoplight).



Frobisher "discovers" O'Malley.



I told Captain Hawkyns to look at me and this is what he did-



He's not even posing. He was just standing there, listening to instructions on how to raise the sails.



Sir Francis Drake and "Marvin Frobisher".



Sailor size comparisons.



Anne-Drew, Frobisher's Ship's "boy".



Sir Francis Drake loves life.



Frobisher and Anne-Drew.



Martin can't take Marvin anywhere.

"LOOK, Cousin Martin! Do you see it!?"

"Yes, Marvin, it's called 'the ocean' and it's all around us."



This is Cassy, but I don't know her character name.



Maeve O'Malley (Grace O'Malley's daughter- the character, not Tabitha)