Off Kilter

One of the worst things about fibromyalgia, in my opinion, is how it changes your sense of self and your physical perception of being.  For me, this is often evident in the feeling that I just don't quite fit in my body right any more.  It's not necessarily anything I can pinpoint, just an overall sense of discomfort, like my body is a set of clothes that doesn't fit quite right. This is mightily annoying, to say the least.  I mean, if it was a set of clothes, you could just take it off.  But what do you do when it's your skin that isn't fitting right?

I've been suffering from this particular malady for about a week or so now this time around.  It leads to a sense of the entire world being off kilter and out of balance.  Or, rather, the sense that you're just not quite aligned with the rest of the planet.  You know the sense you get when the soundtrack of a film isn't lined up just right with the action?  Or you're watching an old badly dubbed foreign film?  Things don't match and the longer you watch, the more disconcerting this becomes. Imagine that your whole life is like that.  Just enough off so that you can tell something is wrong but probably not enough for other people to notice it.

So right now, I'm walking around in an ill-fitting skin, a fraction of a beat off of everything happening around me. I do not like this.  I do not like this in the least.  (I feel like I'm channeling Dr. Seuss here and my next line should include the word beast.) I can't say that my pain levels are extraordinarily high although my brain is definitely fuzzy and experiencing more difficulty than normal in process simple things.  Coming up with the right words is a challenge.  For someone who lives and breathes words like I do, this is rather distressing.

What if I lose my ability to put words together, either verbally or on paper?  What if the written or spoken word suddenly makes no sense to me and it's as if everyone is speaking in a foreign language that I don't know?  These are the thoughts that go through my mind when I'm in this off kilter, off balance, ill fitting state of mind and body.  Everyone with fibromyalgia knows that there are definite cognitive symptoms and effects that go along with it, the dreaded "fibro fog".  Just like everything else about this malady, I'm sure that's as individual as we are.

This lack of uniformity is part of what makes this such a difficult disease/syndrome/condition to deal with.  Not only do we not all experience all of the same symptoms or issues in the same way, even our own symptoms and issues can vary day by day and hour by hour.  One day, you might force yourself to get up and do things in spite of feeling like you can't move and find that the getting up and doing of things actually makes things better and the rest of the day is okay.  The next day, you might hold on to that thought, force yourself to get up and do things in spite of feeling like you can't move and find out that the getting up and doing of things actually makes things worse and the rest of the day is horrible.

There is no rhyme nor reason to life with fibromyalgia.  It's impossible to predict how you're going to feel from day to day and hour to hour.  You don't always know what's going to set you off (and there's nothing better than thinking that something is likely to trigger a flare and then having that flare not happen) and what's safe.  But life goes on and we have to go on with it.  Yes, it's really difficult to think about making plans for anything, even something as simple as a trip to the pharmacy or grocery store, in advance.  We do it anyway.  We have to.  When the time comes, those plans might have to change or be altered but we still need to make them.  We need to make them and hope that, when the time comes, we'll be able to do what needs to be done.  Otherwise, the fibro wins and I'm not going to let that happen.

Random Thoughts

I started a post a week ago, about the passage of time, while I was waiting at the dentist office.  Blogger seems to have eaten it in the intervening week.  Somewhat ironic as it's hard to believe that it was a week ago, already.  The vagaries of time is just one of the random thoughts I've had that I've thought about posting about recently.  You'll notice that none of them have quite made it into the blogosphere as of yet.  I'm hopeful that I'll actually finish something and get it posted before another eon has gone by.

Here's the thing about time: I know that, according to the universe, it is a constant and consistent thing.  Seconds go by, making minutes, which go by making hours, which make days, which make weeks, etc.  And these units of time are all uniform, each one the same as every other.  But it doesn't seem that way to most of us.  I'm sure we've all had the experience of a minute that felt like an hour and an hour that passed in what felt like a minute.  I mean, sometimes I look at my son, almost 16 now, and I remember so vividly holding that tiny newborn baby.  It seems like it was yesterday and sometimes my heart aches for how quickly those years have gone.

For those of us with chronic pain, time can seem even more inconsistent than usual.  Time can slow to almost nothing when you're waiting for a pain pill to take effect or you're waiting for it to be time for the next one.  At the same time, it can fly by and you've lost another week before you quite know it.  Another week where you didn't really get a chance to accomplish anything except make it through from one day to the next.  Sometimes, it seems like that's really all there is.

I've felt somewhat swamped by feelings and emotions lately.  Naturally, that's had a somewhat detrimental effect on my pain levels, leading to multiple mini-flares.  Not all of those feelings and emotions have been bad.  My sister completed her last round of chemo for ovarian cancer and was proclaimed to officially be a cancer survivor and in complete remission.  That was definitely news of the happy variety.  It still brought me to tears but they were tears of sheer joy.

Other things have not quite been as happy.  My mother was officially diagnosed with Alzheimer's after months of testing and more testing and struggling. I wonder if there will ever come a time when thinking about this does not make it feel like a hand is squeezing my heart and making it hurt. I also don't know whether to blame these emotions for the tightness that bands my chest and back and makes it seem like I can't breathe some times.  (Never fear, I have, indeed, discussed this with the doctor and it does not seem heart or lung related.)  Just thinking about this diagnosis can make me feel like I'm on the verge of a panic attack.  I worry about whether my mother will even recognize me the next time I get to see her.  Definitely emotion worthy.

This also tends to be a difficult time of year, anyway.  June 17 marked the 10 year anniversary of the death of my father.  Another way that time fools us.  How can it possible be 10 years already that he's been gone? Shouldn't I miss him less  after this many years? Sometimes he still feels very near.  The other day, I was driving home with my son.  He'd spent the day with two classmates, constructing a trebuchet for the Honors Physics class they are taking in summer school.  We were taking it home with us until it was time to take it to school for the assignment.  Consequently, my car smelled like fresh cut lumber and sawdust and I became completely swamped with emotion and drove home in tears.

You see, my dad was a carpenter and that scent brought him instantly to mind. I could practically see him, standing behind a saw horse, cigarette between his lips, carpenter's pencil tucked behind his ear, getting ready to cut a piece of lumber in our garage. In those memories, he is bigger than life, like he was before cancer shrunk him.  It is one of my big regrets that neither my husband or son ever knew my father before cancer.  Big or small, though, he was always my daddy and he always will be. I doubt another ten years will dim the pain of hearing my brother say the words "Dad died." Heck, just typing them made my eyes leak and my breathing stop for a moment.

I know how incredibly lucky I have been to have been blessed with such love and support in my life. You can't hurt like this unless love like that has been a part of your life.  And I still have that love.  He might be gone but I still have my father's love inside of me.  It's part of what makes me who I am. And I'm not alone.  If anything, my sister's experience with cancer has brought the three of us sisters even closer. At least, I feel very close to them right now and know that they would drop everything and be here for me in an instant if I needed them. So would my brother. I am lucky to be surrounded by that kind of closeness and love, even if there are many miles physically between us now.

I am also exceedingly blessed to have a husband who supports and puts up with me.  I'm sure that isn't easy as I've been an emotional trainwreck lately. He never complains about what I can't do because of the fibro and never makes me feel bad about not being able to do the things I used to.  And that goes doubly for our son.  I often feel like I'm letting him down and I know he doesn't really understand why sometimes I ask him not to hug me so tightly or why I can be crying for no apparent reason (such as driving home with a trebuchet in the car). But he constantly tells me how much he loves me and what a great mom he thinks I am. And when I'm feeling like a failure because I missed a drumline competition by sitting in the car at the venue because I couldn't take the sound and the crowd and I hurt too badly to sit in the bleachers, that goes a long way.

Fibromyalgia is an isolating condition.  Unless someone has suffered from a chronic pain condition, they can't really understand what it's like. We spend a lot of time in our head, just trying to make it through from one minute to the next. Not everyone is as lucky as I am to have family who loves and supports them on this journey to the new normal of our lives.  Never doubt for an instant that we hate it and, no matter what our lives were like before, we'd give most anything to have those lives back. Except my family.  I would not trade even being forever pain free for them. My wish is that everyone have at least one person in their life whom they feel that way about.

Fatigue - It's Not Just Feeling Tired

So, tonight I gave our two puppies a bath.  They're actually pretty good about this, although no one would ever say they were fans of the process.  I figured I was safe to do this because I haven't really done anything else today.  It's been a perfectly lazy Sunday, spent stretched out in my recliner catching up on recorded tv with my hubby.  The process took maybe 30 minutes or so to round them up, shampoo, rinse, condition, rinse, and dry them.  Since my way of doing this is to strip and bring them one at a time into the shower with me, I follow up the process with my own (quick) shower. Doesn't sound too arduous, does it?

But that's it.  I'm done.  Finished.  No energy left and pain levels, especially in my back, are spiking.  So I figured it was a good time to talk about the fatigue that is a major player in the fibromyalgia.  Because many people don't really get what fatigue is.  They think it's just feeling tired.  In actuality, it's much more than that.  It can hold you and your body hostage, making it impossible to move, let alone accomplish anything as ambitious as taking a shower yourself, let alone giving the dogs baths.

The thing is, no amount of sleep, if you're able to get it, fixes fatigue.  Fatigue is when you wake up in the morning feeling as exhausted as you did before you went to bed the night before.  It's taking a 5 hour nap in the afternoon and then being ready to go to bed two hours later.  It's considering how badly you really need to go to the bathroom and if you can postpone it because just the idea of walking from your bed or chair to the bathroom is almost inconceivable.

You know the exhaustion you feel when you have a bad case of the flu? It's kind of like that only moreso. It can appear at any time and last for an undetermined amount of time. It can creep up on you so that one minute you are working away at your desk and the next you find that you can't stay awake.  It can make driving a real challenge.  You may feel fine when you get in the car but then suddenly you find that you're having trouble focusing on the road and your eyes just do not want to stay open.

Fatigue is knowing that your pain levels might actually decrease if you could get up and go for a walk but you can't work up the energy to sit up, let alone make your legs actually move.  Putting on clothes and shoes and getting out of the house? Some days this is an insurmountable task.  None of us like it. We have things we want to do.  We know that the vast majority of people don't understand and don't get it.  They see us as lazy or not pulling our weight helping out with things. Believe me, we would if we could.   Please try not to hold it against us.  Know that if we are able, we'll be there and pitch in to the best of our abilities.  Nobody regrets it more when we can't than we do.

Pain and the Management Thereof, or The Great Medical Marijuana Experiment

Pain has been much on my mind for the past few months.  Living with it, dealing with it, trying to find a way to manage it.  I have discovered that it's not only a matter of trial and error but also, apparently, dependant on the whims of the universe. With any condition that involves chronic pain of any sort, there are highs and lows.  Sometimes it seems like the idea of pain and how to cope with this pain at this particular point in time is always in your thoughts and on your mind.  You get to the point, at times, where you feel you would almost be willing to try anything if only it would bring a brief respite from hurting.

Some of you may remember that several weeks ago I was bemoaning my law abiding ways, having no idea how to go about getting marijuana to try and having even less of an idea of what to do with it if I did happen to obtain some.  I have now managed to find some of those answers and am happy to share the results of the Great Medical Marijuana Experiment here.

After a couple of months of high pain levels, it was my disappointing results at the Beyond Limits Ultra race that pushed into moving forward with that experiment.  Since I had already been doing some research on the issue, I'm happy to report that the whole process of getting my medical marijuana card and then obtaining supplies turned out to be quite quick and easy.  It took me about an hour and $60 to get the card.  This process involved filling out a questionnaire at the nearby medical marijuana clinic that I went to.  I then met with the doctor via Skype, in a private office.  She asked me a number of questions (mostly verifying what I had filled out on the form) and had the person in the office come in to take my blood pressure.  The whole consult with the doctor was no more than 10 minutes or so and she approved me for a card for 1 year.

So now I was able, legally, to obtain marijuana in the state of California.  I had noticed a number of cards and flyers on the reception desk when I checked in so I picked up some of those while the nurse was processing my paperwork. When we were finished, I asked him if he had any recommendations for local dispensaries.  He told me that a new one had just opened a few doors up from them and gave me their card.  I walked the half a block or so and found the place, which was located in a trailer between two storefronts. I went inside, where there was a guard who asked for my ID and paperwork.  Once he'd verified everything, I was allowed to enter the store portion.

I informed the young lady working that I had absolutely no idea of what I was doing but that the doctor had recommended that I start with small amounts of edibles since I had no experience with marijuana.  This recommendation coincided with what I had read about edibles providing the best pain relief.  She recommended their brownies, which I thought were most reasonably priced at $5 each or 5 for $20.  I selected 5 different brownies (mostly different just in what they were topped with, such as M&Ms, chocolate chips, etc.), received her recommendation to start with 1/4 of a brownie, paid (this seems to be primarily a cash only business), she stapled my purchases into a prescription bag, and I was on my way.

Once I was home, I cut one of the brownies into quarters and ate a piece. It pretty much tasted like a brownie. From my reading, I knew that it takes longer for you to feel the effects from an edible than if you smoke, due to the digestive process.  Within an hour to an hour and a half, I was definitely feelng no pain.  Of course, that was mostly because I couldn't feel my body any more.  I completely forgot how to move.  Seriously, when I was ready to go upstairs to bed, my teenage son had to help me get the foot of my recliner down and help me to my feet.  Although I had my doubts, I did manage to make it upstairs and collapse into bed, where I pretty much immediately passed out.

I decided that a quarter of a brownie was too much as it completely rendered me non-functional so I spent some time trying to figure out the correct dose.  As I said, this was a matter of trial and error. I eventually settled on 1/5 being the proper "dose".  I've been through 4 of those 5 brownies at this point and here are my thoughts.

I can't say that I enjoy the way that it makes me feel not in control of my body. Yes, it does lessen the pain but not any better than my pain pills do. It also has the drawback of pretty much making me unable to function in a normal manner or do anything other than sleep. There is absoutely no way that I could take a dose and be able to do my job. I tried smoking some (the nice girl at the dispensary through in a joint for me), twice, and thought I was going to die. I really hated the burning and taste in the back of my smoke and don't think I was able to smoke enough for it to have any effect.  I have heard that some people vaporize it but I'm not sure what is involved in that process. I'm pretty sure I don't have the necessary equipment to do so at the moment.

So I have decided that I will primarily be sticking with my pain pills for now, except maybe sometimes to sleep. I had an appointment with my rheumatologist a couple of weeks ago where I told him that my pain levels were out of hand. He ended up increasing my Cymbalta, adding an extra 30 mg in the morning to the 60 mg I take at night. I'm pleased to report that so far, this seems to be helping considerable. I have mostly been able to make it through each day with no pain medication except at night, to be able to sleep. I have found that if I don't take something before I go to sleep, I am usually awake from pain of one kind or another by about 2 am. I have no idea why. I would think I'd be less likely to start hurting when I'm not doing anything but sleeping but this appears not to be the case. Maybe you're just more aware of your body when you aren't focused on other things, like you are during the day.

I know many chronic pain sufferers who swear by the difference that marijuana makes in their life and I am very happy for them. Sadly, for me, it just doesn't make enough difference to deal with the things I don't like. I do, however, feel that it should be legalized and regulated nationally, so that everyone who could potentially benefit from its use has the opportunity to decide for themselves if it works.

Going Round in Circles and Regrettable Conclusions

Last Friday, my hubby and I loaded up the RV and headed to one of our favorite races and venues.  Two years ago, this was the first race I did beyond a 10k and it will always hold a special place in my heart.  Knowing that I had set a goal to do a half marathon before I turned 50 and that date was approaching right after this race, my husband talked to and set things up with the race directors for me to be able to do a half marathon, even though the shortest “official” distance they were doing was a marathon.  They told him to have me sign up and they would happily let me do whatever I was able and they would give me all the race bling for doing so.  That was the inaugural Beyond Limits Ultra and we’re proud to now count those race directors as good friends and the race as one of our favorites.

The race is held at Pathfinder Ranch in Mountain Center, California and it’s a gorgeous venue for such an event.  It’s a 2 mile looped course, although the past two years have offered an adventurous few the Relentless course option, which adds on a quarter mile rock/mountain climb up and then another quarter mile back down.  Although the main loop is mainly flat, it is not what anyone would call an easy course.  There are a variety of terrains, including one wicked sand section that is a real energy suck.  We park our RV about halfway around the loop, which works out perfectly.  We always get the opportunity to see and run with good friends at this race, which is another reason we look forward to it.

Two years ago, when I went out there to do a half marathon, I ended up completing a full.  I felt awesome and it was fantastic to push myself beyond where I thought I was capable of going.  Pushing yourself beyond your perceived limits is kind of the raison d’etre of both the race and the running company behind it.  Beyond Limits pretty much says it all.  Last year I was thrilled to complete my first ultra at this race, knocking off a 50k.  That was made even more special by doing every step of it with a good friend whom I don’t get to see nearly often enough.

All of that introduction is by way of illustrating how much we love this race and this locale.  So it’s very telling where my head was when I actually considered just not going. That week had been so bad in terms of pain that it was hard to even think about having the energy to get ready to go, let alone actually participate. I registered for this race almost a year ago, signing up for the 50 mile option to challenge myself even further. I knew going in that that wasn’t even going to be a possibility with my pain levels what they were.  It was only the thought of the friends I’d be seeing and the disappointment I’d feel in myself that got me out there.

During the race, I tried to do all I could to minimize the effects of the race on my body.  I walked the entire thing, keeping my pace fairly slow.  I sat in my zero gravity chair for at least 15 minutes (progressing to upwards of 30 minutes as the day went on) between every lap.  I took a pain pill every 4 hours.  By the time I’d finished 5 laps, 10 miles, my body was protesting.  I decided it would be a good idea to take a longer break and stretch out flat in the RV for a couple of hours and see if that would help. In spite of being up in the mountains, the day had gotten pretty toasty although there was a beautiful breeze. I ended up doing a baby wipe bath and turning on the AC in the RV.  I took about two and a half hours off and then finished my sixth lap.  At this point, I told the race directors that I was going to officially drop down to the 24 hour option of the race.  I discovered that a couple of my friends had dropped down from their original race options and were finished so we had a good time hanging out, cheering other runners as they crossed the timing mat each lap, and discussing a variety of topics related to endurance racing.

I had thought perhaps I’d be able to get in another lap or two in the morning but it just wasn’t in the cards. I had a somewhat difficult time trying to get comfortable and staying asleep.  In the end, I decided that it was better not to push things too much since I was going to be flying halfway across the country in less than a week and I was nervous about what kind of toll that was going to be taking on my body. I settled for the 6 laps, 12 miles, that I’d gotten in during day 1.  It was definitely not what I had hoped for and is probably my most disappointing race since my diagnosis.  People have told me that 12 miles is a lot more than most people did that weekend and that what matters is that I was out there.  And don’t get me wrong.  I’m definitely proud of those 12 miles.  They represent a lot.  But when you were originally aiming for 50 miles and hoping to still get in a 50k, it’s a little bit of a letdown.

In the more than two weeks that have passed since I started writing this post (still don’t know where the time went) and the three weeks that it’s now been since the race, I have attempted to put matters into perspective.  My life, no matter how much I wish differently, is not the same as it once was. I have fibromyalgia, which involves dealing with chronic pain, of many different kinds, and fatigue. That’s not going to go away.  I may never be able to get the miles that I would like in long races again.  In fact, I probably won’t.  But I’m stubborn enough that I’m likely to keep trying anyway.  For a while, at least.

The Perils of a Law-Abiding Life

At about 10:30 last night, I was cursing the fact that I have spent my life in a law-abiding way.  I considered the fact that, perhaps, if I had been somewhat less law-abiding, I might have *some* idea how to go about getting marijuana in the middle of the night.  Yes, that is how desperate I was to find something, anything, that might help with the pain.  I might have even suggested to my husband, who was trying to sleep (and the sound of whose breathing seemed to be exacerbating my pain), that he go find me some.  In retrospect, it's probably a good thing he didn't try.  For one thing, I'm not sure he has any idea how to go about such a thing any more than I do.

I don't actually know for a fact that the marijuana would have helped but I have read a number of articles and heard from a number of fellow fibromyalgia sufferers that indicate that it's actually the best thing out there for fibro pain. It's definitely something that I'm willing to try, especially given that I live in a state where medical marijuana is legal.  That being said, however, I have to admit to having no idea how to go about getting it. Do I ask my regular doctor about it?  My rheumatologist?  Do I skip those and see about getting an appointment at the local "evaluation center" place I found when doing a search online this morning?

I'm sure that the last option would probably be the fastest.  I don't currently have an appointment with my regular doctor scheduled until August.  My next appointment with my rheumatologist isn't until the end of April. I have my doubts about whether or not either of them actually provides the necessary documentation. I'm betting I could call the marijuana doctor and get in pretty quickly.  Of course, that's just a guess on my part, based on an article I read earlier today. Hmm.  Turns out I can get an appointment pretty much any time today, between 11:30 am and 6:30 pm.  I'm thinking that might be the way to go.  This "evaluation center" has a number of positive reviews on Yelp and the price for an appointment for a new patient ($55) is very appealing.  Plus, they offer a new patient coupon for $5 off and 50% off your ID card.  I'm wondering if I should go ahead and bite the bullet?

On the one hand, I've never been one to do drugs.  I've smoked pot all of twice in my life - once at a grad school party and one time with my roommate and her boyfriend after I graduated.  I probably had a couple of tokes each time so it's not really like I have a vast experience upon which to draw.  On the other hand, is it really any different than taking an opioid-based pain pill?  Or two, because, like last night, the first one did absolutely nothing to relieve the pain? Last night, all I wanted was something that would relieve the pain enough to let me sleep.  Is my thinking today colored by the memory of last night's pain and my current pain levels and fatigue?  Probably.  Does that matter?  I don't know.

Since I have lived such a law-abiding life and have no experience with things like this, I also have no idea of how much it costs.  And since I'm pretty sure that my insurance doesn't cover it, even if it's "prescribed", I wonder and worry about how much it would cost. After just doing a quick check in with my husband by text, it appears that cost is his concern as well.  He also seemed surprised that I was really interested in pursuing this.  I'm guessing that's the opinion of many people who don't suffer from chronic, on-going pain while anyone who does probably gets immediately that there are times you'd willingly resort to just about anything to make it stop, even for a short amount of time. Right now, my pain levels are high enough that it seems like an idea worth pursuing.

Anyone have any experience with this issue?  I'd welcome any thoughts and feedback on the issue.

Birthday Eve Reflections

Tomorrow is my birthday and I find myself in a reflective mood. For the first time in, I think, forever, I actually feel my age.  Normally, I have to stop to think about how old I am and it constantly catches me by surprise.  I mean, how did I get this *old*? Wasn't I just graduating high school yesterday? Figuring out a major in college? Getting my first real job?  How have so many years passed by since those events?

I know that a big part of it is in my head right now.  It's not in a good place.  I went and picked up the paperwork for HR that I'd asked my rheumatologist to fill out.  I guess I didn't do a good job of explaining what, exactly, it was that I needed and what the purpose of that questionnaire was.  I'm sure he probably thought he was doing me a favor by, in essence, saying that I was just fine and capable of doing my job, as far as he knew.  But what he really did was throw me under the bus.

I mean, he's the one who diagnosed me with fibro in the first place and now he's trying to say that it has no impact on my life? I need to have medical documentation that I've been diagnosed with a chronic condition that does, in fact, have the possibility of impacting my daily life.

To add to this, it took over an hour and a half to get home from his office due to absolutely insane traffic.  Everywhere.  So I'm trying to get myself and my son home, dealing with this bombshell (of course, he's not there on Fridays, he filled it out after my appointment yesterday) and trying not to give in to the mounting panic attack and we're just not getting anywhere.  On surface streets.  Not only was traffic not moving but then it turned out the road I was on ended up being closed so I had to detour a different way.  With the traffic on the street it took me to at a complete standstill.  All I can say is that it was a truly horrific journey.  We had picked up a special dinner to enjoy at home, something I'd been looking forward to for days, and by the time we finally made it home I could hardly make myself eat anything. All in all, not a trip I care to repeat.  Ever.

I know that there is absolutely nothing I can do about this problem this weekend so I am going to try to make it through the next two days without thinking about (okay, dwelling on) it. I want to go and have a good time and enjoy my birthday tomorrow, doing some walking at the 100 Mile Club Run4Kids. The 100 Mile Club is a great organization and we've been looking forward to this event for weeks now. For us, the fact that it was falling on my birthday just adds to the excitement. I'm hoping to see some friends there and to spend time walking with my husband and son, enjoying what should be a beautiful Southern California day.

I had really intended to do more reflecting on the past year rather than just the events of today but those few hours were so incredibly stressful that I guess they just overshadowed everything temporarily. I'll spend time tomorrow reflecting on my 51st year of life as I mark the first day of the 52nd. Then I'll hopefully spend some time putting those thoughts down. And maybe, just maybe, when I do I'll feel 20 years younger instead of 20 years older.

Happy St. Patrick's Day!

I was all ready to write a post this weekend titled "Mother Nature is an Evil, Fickle Bitch" but when I told my son that he should ignore the post I was going to write, he informed me that perhaps if it was TMI for him, I should just not write it.  So I didn't.  I still, however, maintain that Mother Nature is an evil, fickle bitch.  She teases you along, making you think you're done with certain female occurrances and then WHAM! Hits you out of the blue after six months.  Evil.  Definitely evil.

In any case, the horrid week long flare that I was in ended right before Mother Nature decided to sideswipe me (leaving me to wonder, of course, if that horrid flare was in any way related) and I actually had a couple of good days in there.  Followed by a couple of typical female type normal pain days.  Yay for that!

The weather also took a dramatic turn over the weekend, turning unseasonably hot, which might have also factored in to the lessening pain.  My rheumatologist practically promised me at my last visit that my pain levels would decrease as the weather improved.  I'm keeping my fingers crossed that he's right.  I will say, that I am feeling downright chipper and have had two reasonably good days in a row.

In fact, yesterday was limited to a little minor lower back pain in the early afternoon and a headache that came on as I was going to bed.  I still had the headache this morning but it responded to pain medication, which I took as soon as I got to work.  I had a lot on my schedule for today and managed to sail through with no issues, getting everything accomplished and not even getting stressed out about all I had to do, including organizing and running a major meeting.  It's so nice to be able to post about having a few good days and feeling successful for a change.

 Maybe it's the luck of the Irish!

I'm keeping my fingers crossed that this run of feeling good will continue for a few more days, at least.  I don't want to jinx it!  I have a couple more things this week that I need to get through, including an appointment with my rheumatologist to have him fill out a medical questionnaire for HR at work.  This is what they will use as documentation in order to provide any "accommodations" due to my condition at work.  They finally came and did the ergonomic assessment of my office and other work area yesterday and that went fairly well.  He had some suggestions to make for how to arrange things, recommended that they get me a foot rest (once he had my chair adjusted how he wanted it, my feet were not able to be placed flat on the floor - short legs, you know!) and when I mentioned that my boss had offered to buy me a new chair, he said he would include that in the report as a recommendation.

It's not really that I feel like I need much in the way of accommodations.  And if my boss hadn't initiated the whole thing by taking it to HR in the first place, I probably wouldn't think to ask for anything.  But since she did, I'm thinking of things that can make accomplishing my work easier and less stressful.  Mainly little things like being able to flex my schedule a bit to accommodate bad days by leaving a little earlier and then staying later on a different day.  Not having to work nights (I don't currently work a night but I have in the past). Not having to teach a credit class (both stress and time on my feet). Not having to stand for more than 75 minutes (the length of the workshops I teach). Having desk shifts and workshops scheduled earlier in the day rather than later.  Generally, it's all pretty minor stuff in the scheme of things. We'll see what the doctor says.

I'm hoping for a good weekend since my birthday is on Saturday. I'd really like to be able to enjoy the day with a minimal amount of pain! If everything goes according to plan, the family will be participating in the 100 Mile Club Run4Kids event. It's local to us and supports a great organization that encourages kids to get out and run and be active. They track their mileage at different events and school activities, with the goal of getting to 100 miles. Saturday should be fun and I'm hoping for good weather and low pain levels!

I hope Lucky the Leprechaun has dropped by and delivered a pot of gold at the end of the rainbow for each of you!

Trapped

Right now, I feel like I'm trapped in an unending cycle of pain.  This one has been going on for a solid week now and it doesn't seem to be getting any better.  Will it ever end? I'm ready for a little relief.  Please.

I've been having to double up on pain medication and, even then, it doesn't make the pain go away, it just kind of pushes it to the background.  But within a couple of hours (right now, I'm at about 3.5 hours in from when I took first pain pill, 2.5 hours since I added second), even that begins to fail as the pain pushes its way to the forefront once again.  My ability to accomplish anything or focus on anything is practically non-existent.

I hate this.  And I know that there are others who are far worse off than I am.  But that doesn't seem to help and I still find myself sinking down into the abyss.  Any kind of external stimulation - light, sound, smell - is heightened and quickly becomes overwhelming. I completely feel like I should be able to overcome this but today, it's getting me down and making me feel defeated.  I am digging deep today to try to find hope, that thing with feathers that perches in your soul.  Right now, it feels like it has taken flight and abandoned me for the moment.

I used to feel younger than I am. Right now, I feel decades older.  I do not like this.  I do not like anything about this. I want answers that don't exist.  I want to know why.  Why me?  Why any of us? Why does God allow disease and suffering? Do I really need this to "strengthen my character"? Because if that's it, I'll gladly settle for having a weak one.

Wicked

Today's blog title has nothing to do with the musical about witches from Oz and everything to do with my mood.  As in Wicked Bad.  To make it even worse (both my mood and the situation), I don't know why I'm in such a foul mood.  I can only attest, as can my husband and son, that it is so.

I suppose the fact that I have hurt for four straight days might be a factor.  That just usually makes me tired and depressed, though.  It doesn't usually have me wanting to bite the head off of every living creature in the vacinity or snarling at tv commercials.  It's not like those commercials suddenly became inane and annoying today, after all.  It did seem, however, that every single one that I hate was being played one right after the other.  So much so that I ran away from the tv to the sanctity of my bedroom.  Where one of the puppies is currently annoying the bejesus out of me by licking my husband's pillow.

I suppose the fact that I have been running some mysterious low-grade fever for the past three days (anywhere from 99.5 - 100.1) could be a factor as well.  Again, I have no idea why I'm running this fever.  I don't appear to have any other signs of illness (other than still blowing my nose dozens of times a day, either leftover from the cold my son gave me or allergies, but it's all clear with no signs of infection) besides the fever. I do, however, absolutely hate running a fever.  I mean, our bodies just don't do that for no reason, right?  So is it part of the fibro or is it something else?  All I know is that it's been my constant companion since late Thursday night.

I have gotten practically zilch done in the past four days.  Thursday was a day when I hurt so bad I had to double up on pain meds for any relief at all and definitely didn't make it to work.  I did manage to take a shower on Friday and then had to rest for half an hour afterwards before taking my son to a friend's house for the day.  A trip to Costco rounded out that day and I was definitely done after that. I think there might have been a 3-4 hour nap involved that day as well.  I know there was at least a four hour nap, maybe more yesterday.

I did force myself to do our taxes today. While I would truly love to blame my mood on this, I must admit that it was already bad before I undertook that endeavor.  I just hope we don't get audited because I was in no mood to double and triple check everything like I usually do.  I'm counting on TurboTax to have caught any errors and it's reassurance that my risk of audit is "low". Now, if the IRS will just process my refund in a quick and efficient manner and deposit it in my checking account, I would greatly appreciate it.

Tomorrow brings Monday around with it once again.  I really can't afford to miss work yet again. So, body, I would appreciate the following for the morning, please: 1) low, manageable (preferably without pain medication) pain levels; 2) no more freakin' fever of any temperature, low-grade or otherwise; and 3) a definite improvement in my mood.  Universe, if you could work with my body on these items, I would appreciate it greatly.  Thank you.

Sometimes it sneaks up on you

Since my son didn't have school today, I knew I could take a little extra time this morning. After I got dressed for work, I headed downstairs to feed the puppies and make my coffee.  This is pretty much my daily routine, varying only in what I decide to put on my body for clothes.  I sat down with my coffee, thinking I'd take just a few minutes to relax before heading in to work.  I knew that I could take a few extra minutes for myself since I didn't have to do a drop off at the high school.

As I sat there with my coffee, however, it slowly dawned on me.  The reason my breathing was all funky was because of pain.  I tend to do this thing where I hold my breath in for longer when I hurt.  It's not a conscious thing on my part, it just seems to happen.  It wasn't like I was having sharp pain in any one spot.  No, this was just kind of a pervasive ache throughout my entire body.  I have no idea where it came from.  If you'd asked me when I got up this morning, I would have said that I was just typically morning stiff.

I assessed the situation for about ten minutes or so.  Things were not getting better and I kept noticing more aching and pains.  I decided I'd take a pain pill, call in to work and say that I was having some issues but I was hoping I'd be in later.  Luckily, I had no commitments at work today that would cause any problems if I wasn't there.  Unfortunately, it felt like that pain pill did nothing.  It certainly did not alleviate the ache that seemed to be making my whole body throb.  Maybe I'm lucky because that really doesn't happen to me very often.  Usually when I take a pain pill, it starts to kick in within about 5 minutes and my pain levels diminish.

Six hours later, I took another pill.  Again, it didn't really seem to have an effect on my pain levels.  This time, however, I decided to try to double-team the pain.  So I took another pill after 3 hours, knowing that although the bottle says one pill every six hours, my rheumatologist said that I could actually do 1-2 pills every 4-6 hours.  At that point I finally got some relief from the constant ache that was spread throughout my entire body. Although it didn't do anything about the wide spread itching I was (and am still) experiencing.

Oh, the joys that fibromyalgia brings! The never knowing what the day - or even the hour - is going to bring. The things that make no sense, even to us, let alone outsiders.  Things like the complete and utter exhaustion I experienced on Tuesday.  Or the not knowing if it was that exhaustion or something else entirely that caused my eyes to not want to focus or stay open on Tuesday morning. While driving my son to school.  Trust me, this is not a pleasant experience and I've never found anything that works to "fix" that particular situation.  Since I had a lab appointment for bloodwork that morning, I headed to the lab to wait the half an hour for my appointment time.  And fell asleep in the car while waiting.

Knowing from experience that I would just fall asleep in my office if I went in to work, I called in and headed home instead.  I made myself a cup of coffee, complete with my usual addition of a protein shake, and attempted to watch a little tv. No idea what since I ended up falling asleep in my chair for a couple of hours.  At which point, I went upstairs, read a chapter in my book, and then took another three hour nap.  Managed to stay awake long enough to have something to eat with my husband and son when they got home but by 9 pm my eyes were refusing to stay open any longer and I had to call it a night.

I've taken 4 pain pills since 7 am this morning.  I still hurt.  My neck hurts.  My arms ache.  My mid and lower back are throbbing.  My legs feel weighted down.  It feels like there are grains of something under my eyelids which make my eyes feel gritty.  I itch.  All over.  Scratching doesn't help.  I have no idea how I'll sleep since it could go either way. What will tomorrow bring? I don't have a freaking clue.  With any luck at all, it will be a bright sunny day and I'll be pain free and able to enjoy it and actually get something done.  Which would make a really nice change.

Mental fortitude

In trying to decide what to title this post, I've been thinking about this past week. I'm pretty sure that mental fortitude is something that I haven't had.  When I looked back, it feels like forever ago that I made that last post, after the Oscars.  It's hard to believe it's only been a week. On the plus side, my pain levels have been pretty much under control and I went several days with no additional pain medication. On the minus side, my son gave me his cold so I've felt like utter crud for several days. I guess it's a case of you win some, you lose some.

The most stressful part of the week was the follow up meeting on the "Interactvie Disability Process" with HR last week.  This included my boss, who initiated the whole thing.  I am pleased to report that I managed to make it through the meeting without falling apart or crying.  I did get rather upset, and actually managed to voice my feelings over what was upsetting me, as my boss was relaying her "perceptions" and "things I've observed or others have reported to me".  Basically, she was referring to all the time I missed work, especially in the fall as things were escalating and I was going through the process of being diagnosed.

Evidently, it inconviences others when I take sick leave, especially if there is a desk shift or workshop to cover.  According to her, it got so the feeling was just to expect me to not be there and to have to cover for me.  I took exception to this and said it felt like I was being penalized for taking sick leave. Right or wrong, it felt - and still feels - exactly like that.  Especially as I am not the only one to every have to have a desk shift or workshop covered due to absence.  Now, how much of this is actually coming from my coworkers is a big question.  My guess is it was coming from the department chair. I have to admit, it feels like my whole relationshiop with her has changed.  I used to think that we got along well but I can definitely sense a change in her attitude towards me. As if everything I say or do is being questioned.

In any case, other than getting upset at that one point, I held it together during the meeting.  I spent a half an hour crying once I got back to my office as the stress caught up to me and the adrenaline left. It was physically and emotionally exhausting. Still, that meeting is over and now we move forward. The one thing that they can move on before medical documentation from my doctor is a new chair for my office. The HR person was going to try to set up an ergonomic evaluation for this coming week. In an effort to prove that she really is on my side, my boss recommended that this evaluation not only look at my office but at the Information Desk, where I spend several hours a week.  She's actually wanting to purchase two chairs, one for my office and one for when I'm at Info.

I should be receiving a medical questionnaire from HR next week for my doctor to fill out. This will serve as the basis for any accommodations I either request or that they feel would be beneficial. Luckily, I have an appointment with my doctor already scheduled for March 10 so this just goes on the list of things I have to discuss with her. I've actually started a list so that I don't forget any of the biggies: asking for   a measles booster (to protect my new great-nephew whom I'm visiting next month), getting info on the shingles vaccine (seems like it's everywhere these days and that's the last thing I need to deal with), discussing my pain meds, and letting her know about my sister's cancer diagnosis.

I shipped off the first three hats I made for my sister this week and she loves them.  She told me today that her hair starting falling out today, exactly on schedule. I finished two more hats this weekend and started a third today. If nothing else, she'll have a variety of head coverings to choose from until her hair grows back.  Unfortunately, she's unable to see her granddaughter for the time being because the chemo has lowered her white cell count to dangerously low levels.  She's been having to undergo daily shots in order to try to boost them back up.  She gets bloodwork done again tomorrow so I'm praying that they've gone up. She has another week and a half before her next round of chemo and it would be nice if something went her way.

Further proving my lack of mental fortitude and falling into the category of proving what a bad mother I am is the fact that I missed my son's drumline competition performance last night. Not that I wasn't there, mind you.  I was.  I was in the car parked on the street in front of the school where the competition was held. But after making one trip from the car into the school, to find a bathroom and locate where the performances were actually held (a trip that felt like I walked for at least a mile and a half there and back), I was exhausted and my sinuses were killing me.  Not to mention that just the sound levels from outside the performance building were overwhelming.  I just couldn't imagine the lights and the noise inside during the performances.  I could't deal with it.  My son claims that it's fine but I know it's not.  Not only do I feel incredibly guilty but I know that that's a performance I can never get back.  I should have sucked it up, gritted through, and been there.

So there you have it.  I lack mental fortitude and I'm a crappy mother. Tomorrow it's back to work and just the thought of it is exhausting. Once again, I lament that I am not independently wealthy and must, in fact, work for a living in order to actually pay our bills. I was hoping Publisher's Clearninghouse would come knocking on our door on Friday but they failed to come through once again. Maybe with their next giveaway...

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