And the Oscar goes to...

Everyone with fibromyalgia or other chronic pain who pastes a smile on their face every morning, as if it were part of their makeup (although, to be honest, I can't remember the last time I bothered to actually put on real makeup), and replies "Fine" or "Good" when someone asks how we're doing because we know that they don't really want to know what our pain levels are. Some days, some weeks, hell, some hours, that's easier to do than others.

I have been having a particularly difficult time with it for most of this past week. In what was a first for me, I was awoken due to pain at about 2 am Wednesday morning. Even taking one of my Pain pills barely took the edge off and I spent the next few hours trying to get back to sleep. I ended up staying home on Wednesday and taking pain pills every 6 hours. Surprisingly, I actually felt pretty good when I got up Thursday morning. In fact, when I first got out of bed, I was only at about a 1 and could hardly believe it.  Of course, just the process of getting ready for work took me to a 3, which is 

pretty typical. Still, I had hopes it would be a good day.

That hope lasted about until I walked out the front door and was confronted with the thickest fog in my memory. For most of the 25 mile drive to get my son to school and myself to work, you could barely see a car length in front of yourself. This made for a very nerve wracking, white-knuckled, stress inducing drive in. I was at a solid 6 by the time I made it in to work, which meant that pretty much the first thing I did when I got there was take a pain pill. I really try to avoid doing that at work, but sometimes it just can't be helped. Luckily, it did kick in and I managed to make it through the day until it was time to leave for my rheumatologist appointment.

This was my first follow-up with him since going on the Cymbalta and I was happy to report that I hadn't had any of the potential side effects. We discussed my pain levels and he did some tender point assessment. He said that when the weather improved, my pain levels would probably improve as well. He mentioned that some of his patients find that getting vitamin B12 and Toradol (an anti 

inflammatory pain medication) shots help with their pain levels and wanted to know if I was interested in giving that a shot (sorry, I couldn't help myself!) I figured nothing ventured, nothing gained and agreed. He told me he'd see me again in two months, although if the shots helped, I could reschedule for one month and come in for those.

The nurse came in to administer the shots, which are given inter muscularly. I dropped my pants accordingly and she gave them to me, warning that they can be painful. I was pleasantly surprised that they did not, in fact, hurt when administered. My tush was a little tender for a couple of hours but that was it. Sadly, I can't really say that I noticed any difference in things over the next few days. In fact, my pain levels continued to be higher than normal through this weekend. In addition to having my back and neck aching to an uncomfortable degree, I've been experiencing lots of voodoo pain.

I wish I could take credit for coming up with the term "voodoo pain" but I can't. I read it somewhere 

in my researching pain before I was diagnosed. When I read the description of it, I went, "Yes! That describes it perfectly!" Imagine, if you will, that someone, somewhere, has a voodoo doll of you and they are randomly sticking it with a pin. That is voodoo pain. Generally, it's a sharp, stabbing or piercing kind of pain. Sometimes, though, the person leaves the pin in for a while and it turns into a dull ache. Typically, it occurs in a small, somewhat isolated area. 

Both yesterday and today, someone has been having lots of fun with my voodoo doll. They are particularly fond of sticking that pin into the underside of my left forearm. Sometimes they leave the pin in for a few minutes, sometimes they stab it in and then remove it fairly quickly. Today, they have evidently gotten bored focusing on that bone in my left arm and have been changing things up by switching to the same spot on my right arm every so often. Worse, though, is the repeated stabbing of the pin to my rib cage on my right side, right under my breast. They like to do this really quickly, stabbing the pin in and out several times in a row. Sometimes, they stab front, then back, then front, alternating several times so I'm never sure where the pain will be coming from.

So, to whomever has my voodoo doll, I would appreciate it greatly if you'd stop playing with it for awhile. 50-60 years or so should be good. I would also appreciate it, Mother Nature, if you could see your way to some nice, warm, sunny weather here for a bit.  Yes, I know I live in Southern California and don't get to complain about the weather. And, yes, I know we do need the rain. But the constant changes are killing me. Spring semester starts tomorrow, which brings its own set of stressors as students swarm all over the place trying to get the classes they want, parking is at a premium, and I have a four hour desk shift to look forward to, which is at least twice as long as my body finds comfortable. I also have that follow up meeting with HR in the middle of the week so I'd appreciate it if the Universe could give me just the tiniest break. Thank you.

You play, you pay

So, as I mentioned, the hubby and I were headed to Vegas to participate in a running event over the past weekend.  He was signed up for the 100 miler and I was signed up for the 24 hour.  This race took place on a 2.38 mile loop in Cornerstone Park. I like doing races like this one because they allow me to move at my own pace and stop and rest when I need to.  Plus, you're never more than however long the loop is from the aid station!  For someone like me, who needs to be able to stop and sit frequently, it's about the only way to successfully do a race that's more than 5-10k (3.1-6.2 miles).  That being said, I'm still trying to find the balance of how far and how fast I can go without paying for it for days afterwards.  There's definitely a learning curve involved with the fibromyalgia.

Hubby and I crossing paths during the race.  A passing friend offered to take this picture of the two of us. I do regret I didn't get any pictures wearing the giant sombrero he plopped on my head at one point and that I wore for almost an entire lap.

My older sister has told me, more than once, that she worries about me when I do these kinds of things.  She worries about how hard it is on my body and whether or not I should find a gentler form of exercise.  As I tell her, I'm not sure how much gentler than walking I can go!  All the experts seem to agree that mild exercise is not only ideal but necessary to help manage fibromyalgia pain.  They recommend working up to around 30 minutes, 3-4 days a week, on non-successive days.  Walking is perfect.  Swimming is also good, provided that it's done in a warm enough pool since cool/cold water makes your muscles tense up which tends to intensify pain levels.

During a race like the one this past weekend, I try to remind myself that *I* know why I'm sitting in my chair after every lap, with my feet up.  It really shouldn't matter if anyone else knows or what anyone else thinks.  Still, I admit that I feel like a slacker.  I mean, even when I'm out there I'm just walking.  And most of the time, these days, I'm not even walking particularly fast.  If I manage a sub-20 minute mile I'm doing good.  But I have found that if I *don't* stop, if I don't sit down and put my feet up (thank heavens for the spectacular zero gravity recliner that I got for Christmas.  It travels to races with me and totally saves me!), I pay for it.  I need to stop and sit even if it doesn't particularly feel like I need to stop and sit.  Because chances are really good that if I don't, by the time I finish that lap, I'm going to be in pain.

Me, kicking back in my chair during the race

So I'm learning, trying to be smart while still doing something I really enjoy doing with people I love doing it with.  What I learned over the weekend was that I probably should have taken longer breaks between laps.  And maybe I should have signed up for 12 hours rather than 24.  Because I had pretty much hit the wall after 12 hours.  I stopped for the night with 8 laps, 19.04 miles, completed at just a hair over 12 hours.  That last lap was increasingly painful.  I was having an issue with my knee which caused pain to radiate all the way up and down my left leg.  My neck hurt from holding my head up.  Essentially, everything hurt and I knew, before I was a half mile in, that it was going to be my last lap for at least a few hours.

I then spent the next hour trying to get myself comfortable in the car.  While it wasn't Iowa cold outside, it was cold enough that I didn't want to just hang out in my chair for the night.  I managed to actually get some sleep, waking up long enough to shift positions several times throughout the night. I was awake for good by about 7 am, needing to go to the bathroom.  However, I was pretty cozy under my blanket and going to the bathroom required 1) getting out of the car and out into the cold 2) finding something to put on my feet from the back of the car since I just had socks on and 3) walking to the nearby porta potties, always a pleasant experience.  So I put it off as long as I possibly could.

At this point, I knew that the race was done for me.  My 24 hours was ending at 9 am and I was in enough pain to know that going out for even one more lap would not be a smart thing to do.  There was a part of me that was disappointed I'd only gotten 19 miles in, in spite of the fact that I went in with no goals.  It felt like I should have been able to do more, even in the 12 hours or so I'd actively spent on the course.  I know that that's the fibro's fault but it still sucks and I don't like it.  It feels like I'm moving backwards instead of forward.  I know that this is the nature of this condition but nothing says I have to like it. It's frustrating to not be able to push yourself too hard, to not be able to go all out and go beyond your perceived limits.  Inside, I still feel like I should have been able to do an easy marathon, at the very least, or a 50k in the time that I had.

There was a quote out on the course this weekend:
'Success is a little like wrestling a gorilla. 
You don't quit when you're tired. 
You quit when the gorilla is tired.' 
- Robert Strauss

 I kind of feel like fibro is the gorilla that I wrestle. The problem is, it's a gorilla that never seems to get tired.  So I'm feeling a little bit like success is in not letting the gorilla win.  Success is in continuing to wrestle that gorilla even when you want to give up.  Success is continuing to register for races like this one, even knowing that I'll be slower and won't be able to go as far as I'd maybe like and that I might have to stop before I'd really like to.  Success is remembering this:

This is my new philosophy.  It goes well with my race mantra, which I picked up from my husband after his first ultra:  Relentless Forward Motion.  Just keep moving forward.  As long as you keep doing that, it's all good.

I might not have gone as far as I'd have liked.  I certainly didn't go fast.  I hurt more than I would have preferred.  But I spent time with great friends doing something I enjoy.  And, at the end of the day, I ended up with this nice, shiny medal! And, who knows, I may have had just as much pain over the next few days whether I'd done the race or not.  So maybe the gorilla didn't win after all.

Friday the 13th

I am having a very painful day so far, which does not please me. I have much to do to get ready for the weekend, which involves a trip to Vegas and a 24 hour race. I'm sure not everyone would consider that a romantic Valentine's getaway but it works for my hubby and I. Shortly after midnight tonight will mark 17 years since he got done on one knee in the misty moonlight of Redondo Beach and asked me to be his wife. I've never regretted saying yes.

I need this getaway, this escape from reality, for a few days. Work has been exceedingly stressful this week. Evidently my boss contacted HR, "concerned" about how my condition is impacting my ability to do my job.  Which puzzles the hell out of me because, to my knowledge, I'm still doing my job just fine.  The only thing that I have done, as a result of my diagnosis, is to step down from a committee I was serving as chair of. I did a lot of soul searching and it wasn't an easy decision to come to but I felt, and still feel, that it was the best decision, both for the college and for myself. Reducing stress and things that cause you to feel overwhelmed is highly recommended for minimizing fibro pain and flares and this position was very stressful and it had gotten to the point where thinking of everything that needed to be done and coordinated, not to mention fast approaching deadlines, was causing feelings of being overwhelmed, bordering on panic attacks.

I explained this during my meeting with HR yesterday, saying that other than that, which was NOT part of my assigned duties, I felt I was performing my job just fine. So now we will be scheduling another meeting, this time with both my boss and my union president in attendance, to make sure "everyone is on the same page." Although I would not have initiated this on my own, I'm going to use the opportunity to request a couple of accommodations to help me be better able to do my job.  These are fairly simple and basic, such as a better chair for my desk, one which offers better back and neck support than the one I have now. I'm also requesting the ability to flex my hours during the week, if I need to, as long as it doesn't interfere with scheduled desk shifts or workshops.

But I'm not going to deal with that until after the weekend. I'm going to go and enjoy the company of good friends, doing some leisurely miles while soaking up sunshine and vitamin D. I have no goal in mind for the race so I'll be happy with whatever miles I get. I'm going to use it as an attempt to destress and just enjoy myself. And on that note, I'm going to go and take a nice hot shower and figure out what to pack. I wish a pain free and love filled Valentine's weekend for all.

Feeling overwhelmed

I'm a bit of an emotional wreck right now.  I'm feeling very sad and emotional, almost on the verge of an anxiety or panic attack or complete meltdown.  My brain won't shut down and my body hurts.  I want to cry.  But because I'm sitting in my office, I won't allow myself that luxury.  I don't want to be here but I don't feel like I can leave. Usually putting things down in words helps but today I can't find the words.  They are, like me, lost and adrift.

I wrote the above paragraph midday on Wednesday.  It is now Sunday night. It's been that kind of week. When days and weeks go bad like that, our natural inclination is to figure out why. I'm not sure it really helps to know why but that doesn't stop us from trying to find that answer anyway. I had people ask me if I thought it was fallout/aftermath from the race last week. My gut reaction is no.  I mean, maybe that was a small part of it but I think the more likely answer is emotional stress.

You see, on Tuesday night I found out that a girl - woman now - that I had grown up with had passed away. More than a year ago, in fact. November 29, 2013. And it hit me like a ton of bricks. I couldn't stop thinking about it over the next couple of days. And nights, as Sue showed up in my dreams that night and the next. I was in elementary school when Sue and her family moved in across the street. Although she was a little more than a year older than I, we became close friends and spent hours playing together, especially during the summers.

As often happens, after graduating high school and college, our lives took us in different directions. Since our parents still lived across the street from each other, we would still see each other from time to time, when we were both visiting at the same time.  Eventually, though, her parents sold their house in the old neighborhood and moved to Missouri while mine sold theirs and moved to a condo in a nearby community. I would occasionally get updates on her from my mom, who kept in touch with her mom. I think it was at my wedding in 1998 that I heard she'd been diagnosed with breast cancer the year before.

A few years ago, we reconnected on Facebook. I learned that she'd gotten married again and had a son who was just a little younger than my son. She also had a daughter from her first marriage. I also found out that her cancer had come back but she was fighting on, in typical Sue fashion. We weren't in constant contact, by any means, but we kept in touch via our walls from time to time. I knew when she started chemo again and that she was having problems with her feet because of it. Yet I somehow missed when the end was near for her, even though I had shared something about cancer and tagged her in it on November 25 or 26 that year, never knowing that she lost her battle only a couple of days later.

I didn't understand how I didn't know this. It seems like something I should have known. I couldn't get it out of my head. I couldn't stop thinking about her son, losing his mother at such a young and vulnerable age. Which made me think of my son and hold him close. She left behind a daughter, a stepdaughter, a husband, a father, brothers, nieces and nephews. She was my age and she's gone, way too soon. It made me think of my sister's recent ovarian cancer diagnosis and the fear of losing someone so near and dear to me. All in all, I felt like I'd been sucker punched and hit with an emotional ton of bricks.

Consequently, I hurt. I hurt physically and I hurt emotionally. I couldn't seem to get it together. I rank days by whether or not I need to take pain medication. Good days involve no pain meds. Bad days are ranked by the number of pain pills I end up having to take. A bad day involves two or more pain pills. Thursday and Saturday were both three pain pill days. Saturday also got two muscle relaxers, marking it as a Really Bad Day. Nothing really seemed to help yesterday, especially with my head and neck. Today has been better as I've managed to not take any pain meds. Not because there was no pain but because I didn't have any where to be and I decided I could get through without. Although I'm not sure I'll actually be able to sleep if I don't give in and take one. My left hip and leg are really hurting and the peripheral neuropathy in my right foot has decided to start zinging me.

I am trying to dig my way out of the hole I feel like I've been in. To balance the emotional low of the beginning of the week, there is the emotional high of my great-nephew's birth on Friday night. We have been anxiously awaiting his arrival and there's pure joy in having him here at last. Even better is the fact that my nephew cared enough to FaceTime me on Saturday from the hospital so that I could get a good look at him, count his fingers and toes, and feel like I was a part of things even though I'm 1800 miles away. Plans were also made for me to visit in-person in April so I can cuddle him myself. Hopefully, having that plus the frequent baby pictures that have been promised to look forward to will help at least a little with the emotional end of things.

A finish is a win

Today, I finished my second half marathon. I can't lie.  It hurt.  It hurt a lot. In different ways than it hurt last year.  Still, I am glad that I forced myself to keep going through the pain and finish. Every race I start and every race I finish Is one more day that the fibro doesn't win.

The weather this year was much better than last. I did not miss the wind and cold from last year at all. It was nice to feel the sun during a race for a change! The weather is probably what enabled me to do
 as well as I did, although I'm disappointed that I missed a PR by .08 of a second. However, 
considering that my pain levels were higher before the race even started than I would have liked, I'll take it. Between that and having to wait around in the cold for more than two hours before my race started, I'm amazed things went as well as they did.

My approach for this race was to distract myself by listening to a good book, something that would 
keep my attention and give me something to focus on other than each step on the road. As a strategy, it worked pretty well and my pace remained fairly consistent, at least for the first ten miles. At around mile 8, my pain levels were really starting to climb, in spite of the pain pill I'd taken a couple of hours before. I pushed through until almost mile 9 and then gave in and took another one, even though it was sooner than prescribed.  However, I know that my pain meds are probably the lowest dosage out there  (have definitely seen others mention ones twice as strong) and I figured the benefits were worth it. Honestly, I'm not sure if I could have made it through those last four plus miles or so otherwise.

At about mile 6 I realized how spoiled I am by ultras and their well stocked aid stations. Although I'd had part of my coffee/protein shake combo on the drive down, I hadn't quite finished it. For some
reason, I didn't pack any beans or bars with me and by the time I got to aid stations, anything besides
water or vitalyte was gone. I was really feeling this by the turn a around at mile 8. Right after this, though, someone asked me if I wanted a graham cracker and opened a fresh pack and handed me two when I said yes.  At the same time, a representative from Clif offered me a package of Clif Bloks, which I gratefully accepted. I tell you, I'm not sure I've ever enjoyed anything more than those graham crackers! Then at about mile 10 someone gave me a Lara Uber salted nut roll. Next regular
race I do, I'll have to remember to take my own nutrition!

My pain levels dropped down to about a six after that pain pill kicked in, which helped.  Still, I could 
tell I wasn't going quite as fast, although I was keeping up with the same walkers I'd been keeping 
pace with for most of the race. A friend who had already finished her half found me on the course
somewhere between mile 11 and 12 and asked if I wanted some company. I remember commenting to her as we hit mile 12, asking how it could only be mile 12. I turned off my book and we chatted all
the way to where a race legend, Ed "The Jester" Ettinghausen, was cheering runners on at the point
where there were .2 miles left to go. I'm lucky enough to count Ed as a good friend and the big hug and words of encouragement I got helped me push through that last .2 miles.

My husband had finished the marathon shortly before and was waiting for me at the 13 mile marker. Another hug for encouragement and I pushed through to cross the finish line. The clock time read 5:04 something and I was disappointed, thinking that it had taken me over 5 hours to finish, which
would have been much longer than last year. I had forgotten, though, how many waves there are to the half marathon start and how long it takes to get everyone across the start line. Since I'm in one of the last waves, I didn't cross the start line for well over half an hour after the clock started.

Some comparisons of my finish stats between last year and this year:

2015

Runner Details	Race Results
Bib: 17568 Name: Deb Distante Gender: F Age: 51 Hometown: Eastvale, CA	Overall: 14109 out of 14156 Women: 8569 out of 8605 F 50-54: 878 out of 883 Age/Grade: 28.30% Place: 13955 Finish: 4:26:46 Pace: 20:21 Chip Time: 4:26:46 Gun Time: 5:04:31
Split Times
5 Km: 59:31 Pace: 19:10 6 Mi: 1:58:39 Pace: 19:47 9.5 Mi: 3:00:18 Pace: 18:59

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2014

Half Marathon

Runner Details	Race Results
Bib: 20605 Name: Deb Distante Gender: F Age: 50 Hometown: Eastvale, CA	Overall: 15480 out of 15509 Women: 9383 out of 9407 F 50-54: 871 out of 871 Age/Grade: 27.96% Place: 15341 Finish: 4:26:39 Pace: 20:20 Chip Time: 4:26:39 Gun Time: 5:15:30
Split Times
3 Mi: 56:28 Pace: 18:49 5 Mi: 1:32:33 Pace: 18:30 6 Mi: 1:56:39 Pace: 19:26 9 Mi: 2:55:03 Pace: 19:27 11 Mi: 3:41:42 Pace: 20:09 12 Mi: 3:59:45 Pace: 19:58