Thursday, May 15, 2014

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 and Frobisher on the platform

O'Malley delights in antagonizing Frobisher.

Pirates on the CTA

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

The pirates search for a new mode of conveyance...

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

Pirates meeting heroes.

Frobisher "discovers" O'Malley.

Frobisher spots O'Malley on the bus

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

"Hawkyns, look over here at me!" (was my command)

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

Captain Sir John Hawkyns

Sir Francis Drake and "Marvin Frobisher".

Real pirates are limber

Sailor size comparisons.

The size discussion continues...

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

Frobisher's Ship's boy

Sir Francis Drake loves life.

"Life is GOOD!"

Frobisher and Anne-Drew.

Captain Frobisher and Anne-Drew, his ship's boy

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."

"Cousin Martin! LOOK!"

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

Lovely lady pirate

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

Maeve O'Malley

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