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.