Hey there Benia! I got your question and decided to ask you the same one. How did you come to be an Atheist? Were you raised to be an Atheist or as a religious person?

I was born of Polish-Catholic immigrant parents, in Chicago. They baptized me and put me through Catholic school up to eighth grade. As I went through my teen years, I continued to believe and attend church regularly with my parents. As an adult, however, I started realizing that there was more to the world than what I had known, and, slowly, my mind expanded. I met new people, learned new attitudes, and became less fearful of the big world and started owning it. Getting over God was a milestone for me. By the time I was in my mid-twenties, I had considered myself Agnostic. Only a short time later, I decided to stop hedging my bets and boldly considered myself officially atheist. It's the only explanation that makes sense to me.

What's on your mind? Fun or serious questions welcome.

Dyslexia & Dyscalculia

I've been accidentally flipping numbers around at work like mad lately.  I'm finding myself spreading "sorry"s all over the place because I keep referring to the incorrect reference numbers in messages. 

What's up with this? I've never been plagued with dyslexia as a kid.  In fact, math was probably my best subject through high school.  (I aced every year, including the AP Calculus I took in Senior year.)  I can only wonder if this is yet another way my concussioned and fibrofoggy brain has decided to vex me.  With the supposed ADHD affecting my concentration, should I consider this number flipping an extension of that problem?

During my self-analysis, I found this interesting term and article: Dyscalculia. Particularly, I notice "Dyscalculia can also occur as the result of some types of brain injury."  Under the symptoms listing I also notice difficulty with judging time, which I have also noticed in myself lately (or for all I know, maybe it's been going on for years now).  I also noted in my journal recently that I had repeatedly noted the right side, instead of the left side, had been bothering me lately.  Repeatedly.  Who gets left and right confused as an adult?  I guess it could happen to anyone. 

I could be reading too much into this.  I'm one of those kind of people who tries to be vigilant, but sometimes ends up being neurotic.  That's all a matter of opinion, though, right?  Can you relate?  What's your feelings on this?

Feeling Barfy

I don't know if I have enough to say to justify this post, but I have been sliding back into a terrible flare up for the past week now.  There is a pain that started in my upper, left back, near my shoulder, about a week ago.  It felt like a really bad trigger point knot, so I worked it by leaning against the smooth, rounded corner of our fridge, trying to loosen it up.  I may have done either too good a job or not good enough, because the pain has changed and spread to the entire vertical back on the left side, and around to the left side, under my arm, especially when I breathe.  The pain is like a soreness (which makes sense from the pressure I put into it) and a sharper, knife-like stabbing pain that prevents me from taking full breaths because the pain increases as I breathe in.  I believe all this pain (along with my meds and supplements) may be what has been causing me to feel nauseous much of the time, which is not fun, either. 

I'm getting crankier by the minute and I don't know if I should just let it happen (the bad mood) or resist and play nice, so I don't cause more relationship problems with people.  I have remained as calm as possible for the past week, even managing to enjoy some distractions here and there.  Yesterday, however, while other issues pressed on and added to the stress pile, I let a few tears go.  I hate the crying.  It feels like a weakness, though I know it's part of the human limitation to have to cry at terrible crap once in a while.  When I cry, what little sense I have left is out the window.  I can try to talk myself out of it, but it doesn't go well.  Don tries to help me cross that river of despair, too, but it is infinitely more difficult to understand and deal with under the duress than afterward, when my logic starts to come back to me.

Fibromites, how do you handle the more devastatingly painful times when the last straw finally breaks the camel's back and you feel the tears of pain well up in your eyes.  Do you have any tips or tricks that have helped you?  I've been looking at my little caterpillar magnet and remembering and knowing that I will have better days, but this pain is really testing me.

If 3 strangers came to your house and their names were Sucess, Wealth and Love. And you could only invite one in.Who would you invite?

Well this is definitely a creative way to ask something. I might invite all 3, but since I'm limited, I guess I'll have to be rude to 2 of them.

Hm... Love I think I have already, and I'm okay with the amount of Success I've had so far (outside of luck with health problems, of course).

As shallow and disappointing as this may sound, I would choose Wealth right now. I'm not looking to be rich, I just want to ensure financial security for myself and my husband. Since we are both chronically ill with painful and incurable conditions, it would be most comforting for us to know that we would not have to struggle with working and bills when we need to rest. We could live the rest of our (quite possibly short) lives not trying to pursue the material things we need to survive. Instead, we could focus on being comfortable and enjoying what life has to offer.

Ask me anything

I Think I Fixed my Wagons

Since I was up since midnight this morning, I had some time to do some journaling. While writing, I pondered my "Wagons" problem and I think I've finally figured out my priorities, with subpriorities.  Here is the priority of things I'd like to do to improve myself.

1. Exercise
1. Stretching
   I need to get back on track with the daily stretching routines to keep my muscles loose.  If I don't stretch, my myofascial trigger points will likely act up, causing pain and a cascade of other symptoms (including these sleepless nights).
   
   
2. Strength Training
   Once I am able to do stretches regularly again, I'll start adding back some of the isometric exercises and concentrate on building up lost muscle.  My scale measures body fat percentage and it's gotten very high - 33%. 
   
   Muscle atrophy is definitely contributing to my weakness, fatigue, and pain, as well as my slowed metabolism, fatness, and some lowered self-esteem, I'm sure.
   
   
3. Endurance TrainingOnce my muscles are built up a bit and I'm able to handle the strength training exercises, my next exercise goal will be to try to increase my tolerance for doing any activities.  At first, this will be walking and doing chores, but hopefully, some day, I might actually be able to more, like biking or maybe even play a tennis game or something. 
   
   This is a lofty goal for me right now, but it's good to have something to shoot for, right?  Besides, some of my fibromite friends are reporting to me that they are running and doing all sorts of things.  (Color me jealous!)  Of course, others in my FM-ily are on the opposite end of the spectrum, bedridden and on the brink of despair.  I am in the middle right now, and I am hoping that by putting this goal down in writing (and in public) that I remember to do what I can, while I can, to try to stay ahead of that worst case scenario that I fear may once dominate my life. 
   
   
2. Weight Loss
   Get back online at Calorie Count and start back up logging calories eaten, calories burned, track my weight, and work toward (gradually and responsibly) losing at least 10, if not all 20 of the pounds I gained since last year.  I'm going to concentrate on eating healthy foods and healthy amounts. 
   
   This site really is helpful, but I'm taking a break from all the detailed logging for the time being, because... well, I'm not ready to get on that wagon just yet.  Now, that doesn't mean I'm giving myself the green light to eat crazy amounts of crap!  I do enjoy all sorts of foods, but if I don't eat at least one vegetable every day, I instinctively start looking for them, just to help balance things out.  When you have a chronic illness, getting the proper nutrition from your food is especially important. 
   
   I feel like doing the calorie logging I've already done was like the practice, or training I needed to get a feel for the way I should eat and feel during the day.  The training wheels are off for the time being, but I'm still sort of doing okay, I like to think.  I'm just not making it a top priority (yet).  I put this goal below the others for good reasons.  It will be much easier to lose weight once some of my lost muscle mass returns and I'm able to exercising.  I also imagine I will be in less pain, thus less stress.
   
   
3. Reduce Medications
   I'm on a lot of meds at the moment.  Despite the number of medications I take, the fact that I've been flaring up pretty frequently and severely enough to interfere with my work and social life leads me to believe that some or all of them may not be doing what they should.  Why am I ingesting so many expensive chemicals into my body if I'm still going to be flaring all over the place? 
   
   Since I have decided to do as much research on my health conditions and medications as possible (so I can be primarily responsible for my health, with my doctor's assistance), I am also aware that there are many side effects and possible drug interactions or other problems associated with taking them.  Drugs.com is truly a great resource for researching all the possible information that exists on any medication, but if you're not ready for the scary bits, it can be a bit overwhelming.  I have to trust that my doctor understands all the precautions (dosage limitations, listening for new and relevant symptoms, etc.), but I am also not bashful about picking his brain about certain troubling drug combinations if I'm worried about them.  I urge you all to share any worries or questions with your doctors as well.
   
   
4. Stop Finger Picking
   Where did that one come from, right?  I'm stressed.  I also have obsessive-compulsive tendencies.  One of the ways I am expressing this combination of mental challenges is a terrible habit of picking at the edges of my cuticles and hangnails, and the rough skin around my fingertips.  The more picking there has been, the more tempting it is for me to continue, since the picking results in rough edges that heal up a little, and hurt less.  I'm noticing that the longer my nails get, the worse it gets.  I have also used tweezers and cuticle nippers, always with the intention of smoothing out or perfecting the surface.  But it never seems to work; it usually makes things a lot worse.  I have pulled and picked until I hurt and bled.  I don't understand why I continue doing this, but I have tried and tried to quit many times.  I know I have to.  It's disgusting and crazy!
   
   It's a strange, but apparently not uncommon habit, as I have discovered.  Band-aids are helpful, but so wasteful, and they are also very annoying, especially when they get wet.  I figure this goal is the last priority of these because I believe the stress from not having the above issues under control is greatly contributing to the underlying stress that makes me need to pick.  Hopefully, once I get to this final wagon, the final leg of the journey will be much shorter than it would be otherwise.

So there it is.  All my ducks are in a row and I'm ready to start my journey, one little inch at a time.  Slow and steady wins the race, right?  I'll keep you all posted on my progress.

Beercation 2009 - Photos!

The Fibro Frog strikes again!

I'm so sorry, dear readers.  I recently realized that I'd neglected to share the link to all the photos Don and I took on our Beercation (beer + vacation = beercation) during the very end of 2009.  I see that I posted a little something about it, but the photos were not uploaded at the time.

Well, without further ado, here are all the photos, with my captions added. 

Beercation 2009 Photos

I hope you enjoy them.  As always, feel free to comment, either on the photo pages themselves (via Picasa Web by Google) or here, at The Table.

What traits do you have that make you a good friend?

This questions is probably best answered by my friends, of course, but here are the traits I have tried to develop in myself over the years:
- I'm honest and don't pretend
- I am true to my word (I don't make promises lightly)
- I give when I see a need and am able to give
- I keep my expectations of others low
- I strive to keep an open mind and look at situations from all perspectives before making a judgment about someone (sometimes I frustrate with my "Devil's Advocate" questioning)
- I try to be sensitive to other people's moods and mindsets
- I share my feelings (I like to be open about my moods and opinions, so there is little misunderstanding)
- I know I'm not perfect and neither is anyone else

Having listed all those wonderful qualities, I feel compelled to add that I stumble and make mistakes now and then. This is how I learned and adapted in life, noting consequences and regrets, as well as successes. My goal as a friend is to make you feel accepted for who you are and offer comfort and encouragement when it is needed.

Friends, I wouldn't be opposed to your honest feedback on any of the above. Feel free to leave your comments in my blog, Twitter, or FB page. I am interested in everyone's thoughts.

Ask me anything

Wagons

I'm sure this has happened to others.  January came around and I was determined to turn over a new leaf and improve myself.  This year, I'd really make a difference.  I would lose that extra 20 pounds I'd gained (did you notice the ladybug on my blog hasn't crawled much yet?), take charge of my health and figure out how to better manage my symptoms, do more exercising, get organized, and finally take steps to get going on a few big projects that have been on my mind.  I would be a better person and improve my health, looks, and self-esteem.  Why wait, right?  I knew it would certainly be a challenge, but not impossible for me.  I mean, ME - I'm a determined person, always looking for improvements, and I've got plenty of character.  I could surely get a few things going.

Of course, you know what's coming.  I tried to get on too many wagons at once.  Silly me - I set myself up for additional stress and problems by forgetting that I'm merely human.  We would love to think of ourselves as at least better than average, wouldn't we? 

I'm better than most.  I can handle this AND that... and that, and that, and ooh, let's throw in that, while I'm at it....

Oh sure.  Throw it on top of the pile.  Put it on the list.  I can do it.  I can do anything I set my mind to.  Ugh... hasn't Fibromyalgia taught me anything?  How could I have missed this one?  I have limitations.  Even "normals" have limitations.

So, here's what I've learned about all this.  When I get on a wagon, I'm on THAT wagon.  I can look at other wagons while I'm on one, and I can plan my transitions to other wagons, but I can't ride them all at the same time.  Once I get to my destination on the first wagon, I can transfer to the next wagon and hop on it for a bit.  Eventually, I will get to my destination, and the riding may be slow or bumpy.  

I am the driver of these wagons.  I've driven wagons before, but it's been a while.  I will have to account for a break-in period and get accustomed to my new wagon.  I may make some wrong turns or get lost, but eventually, I'll get back on track and make progress on my journey.  I will see new and interesting things along the way.  I will see some old friends and meet new folks, some helpful, some not so helpful.  The road may be smooth or bumpy.  If it gets too bumpy, and I'm not prepared, I may fall off the wagon, but the wagon will not ride off without me.  It will be there when I'm ready to get back on and keep going.  These stumbles will help me learn when to brace myself and where I might expect more bumps.  Each time, I will be better prepared than the last.  I will make slow and steady progress toward my next stop.  I'll journal about my trip and take pictures, so I'll remember interesting experiences.  I'll share some of my experiences with other travelers I encounter on the same roads.

I plan for real trips in great detail, choosing routes, stops, and any transfers.  I do my best to estimate the timing, with plenty of cushioning just in case of unforeseen delays and problems.  I also pack extra necessities, just in case.   I prepare for the entire trip as best as I can.  If I forget to pack something I need, I may be able to substitute by buying or borrowing things along the way, or find creative ways to make do without them.

Now, which wagon should I choose to drive first?  Sometimes, the most important one should come first, but sometimes it makes sense to make a shorter, easier wagon ride first.  Once I've planned my entire "journey", I can fine tune the details of which wagon is closest, a reasonable distance to travel, and how to get to the next wagon.  This is going to take some thinking.  I don't have all the answers now.  All I know now is that I need to think about what I want and plan this out before taking my progress seriously.

I Will Have Better Days

I've been inspired by my own recent flare to create this very meaningful reminder that "I will have better days."  It's a photo of a very teeny, tiny monarch caterpillar that I took in my yard one day, as he munched on the leaf of one of my common milkweed plants.

This little critter was so small, (roughly this small: ====,) I could barely see its characteristic stripes.  Luckily, I was out looking for monarch caterpillars that day, looking under milkweed leaves all over the yard.  It was slightly breezy, which made for quite the challenge to photograph my little friend using my tripod and macro lens, as the plant swayed in and out of focus.

This photo is the result my hard work and determined effort, so it's a very personal reminder for me.  However, any of my fibromite friends, or anyone dealing with any chronic illness or difficulties, may find having this little reminder around helpful.

Just think: Each butterfly starts out as a teeny, tiny caterpillar that munched, hid, and survived until it was time to fly!

I'm going to make sure I order one of these and keep it in plain sight, so I won't lose hope during my next fibroflare.

I'll Get By With a Little Help From My Friends

I'm doing much better today, thanks in part to my fantastic friends who were brave enough to contact me despite my gruff demeanor this morning.  A few kind words do go a long way, especially when things seem dire.  

I learned to appreciate the fact that I'm managing to handle the adversity I have, even though I sometimes get a little lost along the way.  It's a bit of an ego-boost to say I'm better than average because I'm so constantly challenged, but hey, it works. :)

Lastly, I want to remind myself and everyone else of something I'd forgotten: 

"I will have better days."

I had this little note jotted down on a post-it for a while, but I guess I thought I had it down pat because I got rid of it.  Well, I don't.  When shit hits the fan (like yesterday and the day before), all logic seems to go with it as well.  A small reminder like that one (or "don't panic") will probably do wonders for me when I can't think clearly enough to remember that I'm just dealing with a temporary flare-up.  Today is proof that it was temporary.  I do feel much better and even managed to laugh and smile a bit.  I'm going to have to come up with a clever way to make sure I can see this reminder when I need it most.

Thanks everyone.  Just knowing you are reading this is helpful to me.

Not Feeling Wonderful Yet

Today is my second sick day in a row.  I've been feeling awful in just about every way, lately.  Among the usual symptoms, I've been dealing with something new, since last Saturday morning.  It's a feeling of pressure in my upper abdomen, and I notice it is more uncomfortable when I breathe in deeply and just after eating (even just a little).  I'm also feeling more burning in my throat again lately.  I'm taking TUMs now and then, but it's still there.

I did some digging online and have narrowed it down to two possibilities: GERD and hiatal hernia.  I am taking it easy and resting as much as possible so my aches and pains may at least improve by tomorrow.  I have a job and cannot afford to slack.  The job/illness conflict has been weighing heavily on my mind lately.  I need the income and the insurance.  I really don't know how to proceed if things fall apart for me with work.

I'm off to bed now.  I started on the Sonata last night and I'm not sure if it was the drug change or the flare or both, but I kept waking up in pain all night.  Ugh, I need to get away from this computer for a while and really rest.

It's Time for Some Changes

I went to see my neurologist this morning.  Basically, since the end of December, when I last saw him, I had one great month (remember when I was giving away my "spoons"?), and now a kind of shitty month (now it's more like: "hey, brother, can you spare a spoon"?).  

In my little fibro-world, when things are mildly acceptable, I am elated about it.  I get to smile and laugh and joke and even enjoy some things.  But there is some sort of threshold in my pain tolerance - and I guess everyone has one - when I keep trying to just buck up and "make it, Champ!" but end up sort of a quivering mess.  

I know it may seems silly to most "normals" out there that a backache or some jaw pain or some insomnia can cause me to have a major meltdown, but throw a few of these symptoms together, multiply the intensity several times, and leave them to worsen over a period of not hours, not days, but weeks and even months on end of constant, chronic, unrelenting symptoms, suddenly retaining sanity becomes a real challenge.  Throw into the mix the fact calling in sick for several weeks straight is simply not an option, especially with medical benefits for both myself and my husband riding on my performance and full-time status.  Let's just say it's a character builder (and I've got character oozing out of my ears).

Anyway, after a somewhat less snarky explanation of the above, my doctor offered me some options, which I agreed to try.  

Since my Tramadol doesn't seem to be helping me with pain any more, and since there is a danger of serotonin syndrome if I increase the dose and continue taking Pristiq, I'm now going to try Darvocet for pain.  Darvocet, I was promised, would perform much better on all kinds of pain, but it may cause side effects, especially in sensitive me.  After the description, I told him that it sounds just like the "magic wand" I need!

Since the Ambien I've been taking (only 5mg per night) always seems to want me to sleep for 12 hours (no exaggeration), and also since I've had problems properly waking up after those 12 hours (I have these weird, lucid dreams in the mornings), the doctor is having me try Sonata.  He tells me that Sonata will allow me to wake up more nicely in the morning, while still helping me to get to sleep in the evenings and in the middle of the night when I toss and turn from pain. 

Finally, and this one was the most difficult decision for me, because of my severe concentration problems at work and my tendency to be easily distracted, my doctor offered me a prescription for Ritalin.  My job as Senior Business Analyst in IT requires a lot of abstract thought, sometimes with multiple steps having to be played out in my head before taking action.  I've always been a diligent worker and am proud of my career progress.  However, at times I feel like a completely different person, trying to do Benia's job.  All it takes is one, quiet side conversation, whether it's about work or personal stuff I don't even care about, I cannot help but hear a word or two, then POOF! - situational amnesia sets in.  I can't remember what I was doing or what I was about to do, or why I picked up a pen or what I wanted to type or anything.  I stare and stare at my workspace, hoping something will come back to me.  Sometimes, it does, but other times, I have to let it go and do something else until I find my way back to it.  

That is so unproductive, and since I tend to have a lot of tasks assigned to me (as the expert or specialist, or person assigned to a project, etc.) I become this bottleneck for projects.  When my whole department has to delay a software release because I'm two days behind, I feel the stress.  I'm not a slacker and I can't tell what my coworkers think of me.  Not all of them know or understand about my health problems.  Well, at any rate, because this is such a big deal to me, I decided I should try the Ritalin, once and for all, and see if it's good, bad, or doesn't do anything for me, just so I know, once and for all.  The Ritalin is not replacing anything I'm already taking, so, unfortunately, this is adding to my mix of drug treatments.  However, if it helps, it will make a world of difference for me.

Each new drug will be tried one week after the previous one, so I can judge its effectiveness without having to guess too much which drug is doing what to me.

Wish me luck.  If you're a fibromite (or someone who has had a concussion, like I have), and you've tried any or all of these medications, let me know your experiences.  Every patient is unique, but I'm interested in knowing what they did or did not do for you.

Feeling Icky

Bleh...  In a word, that's about how I've been feeling for the past week or three.  I'm so glad I had some good days to celebrate, because these are the days when I just don't have it.  I'm tired, I'm achy, and I have to really push myself to get anything done. 

My motivation is getting things off my to-do list, because I keep writing things down over and over, wherever I am, on various slips of paper, and eventually, I have lists and lists repeating the same important tasks all over the place, while the task itself remains undone.  I'm proud to say that I managed to cross a couple things off my lists today, and even tossed an obsolete list or two away.  It's progress that I am happy about, even though I know I could have done all that and more very easily in "the before time".

I've noticed the stairs are getting more and more taxing on my leg muscles, lately, too.  I have been mixing up my stretching routines with some isometric strengthening exercises, including some squat-type moves that help strengthen my leg muscles.  Of course, progress has been slow.  I have been slow!  

I feel this post is somewhat disappointing, but I wanted to check in with whoever might be reading and let them know I'm still alive.  I'm just not feeling right lately, so I don't have much to say today.  I'm feeling icky with a flare-up and I'm pushing through it.  

formspring.me

If you could have perfect health, but only by giving up one of your five senses, which one would it be?

I thought and thought about this. I would not choose to give up sights or sounds - that seems too drastic. Touch is tempting with the fibro, but think of how lonely and weird that would be, especially if losing a sense of touch could make me fibro-free. It's like the gift of the Magi.

At first, I was going to choose my sense of smell to give up, since it seems to be so minor in a person's life, plus there are so many unpleasant smells that I could do without. Then I remembered that taste is affected by smell, and I would be losing part of taste as well as smell in one shot. That would kinda suck.

Ultimately, I decided, and this was a tough one, that I would lose my sense of taste to be perfectly healthy otherwise. I would not be able to taste my favorite foods, but I could still smell them. I love the smell of a nice, hoppy beer and always take a great, big whiff before my first taste of a new beer. Perhaps I would eat more healthfully (you know, eat to live, rather than live to eat) but not have to sacrifice the world of wonderfully smelling foods.

Ask me anything

"Weird" Things I've Done

What is the weirdest thing you have ever done?

I struggled with this question. I've done some unusual things, but nothing completely unheard of. I don't know if there's anything weird enough to be fulfilling as an answer to such a question. Here are several "weird" things I've done. Perhaps you can decide which is the weirdest.

My husband and I have converted our entire front and back yard lawns into organic, native gardens to better support the local native ecosystem, save on mowing (work, pollution, noise), and make better use of rainwater.

Don and I sometimes take "beer-cations", which are road trips planned around specific breweries and pubs where our favorite microbrewed beers are available.

I have endured three months on a "yeast-free" diet (which I hated but made me skinny for a while). I had to cut out sugar and all sugar substitutes, yeast (breads, beer), vinegar, additives, and other specific items. I also had to limit my dairy and fruit consumption. It was doctor-ordered by my fibromyalgia doctor at the time, who suspected I had a yeast overgrowth in my gut, and could be contributing to my fibromyalgia symptoms... but he was wrong. I felt awful on this diet and he ordered me to stop after three months instead of six months.

I had a tonsillectomy a few years ago because the crypts in my tonsils were breeding bacteria and making tonsilloliths that I had to periodically poke out with Q-tips or water jets or my fingers.

I'm sure I've done other things that some people consider weird, but this is all I can come up with for now.

Ask me anything

Home, Home on the Bed...

It's time to pay the piper.  Thanks for the little break from the worst symptoms, Fibrobeast.  It was a good several weeks.  Now I understand that it's your turn to get what you want, isn't it?  Fine.  I called in sick today, took some pain meds, and I'm going to rest today.  Hopefully, by tomorrow, you'll be merciful.

Talker vs. Listener?

Are you more of a talker or more of a listener?

I believe I do a lot of both, but I am better at being a listener.

Ask me anything

Extra "Spoons"

After some typical ups and downs in my fibro world, both during and after my much-enjoyed "beercation", I actually seem to be feeling pretty...great, lately.

I have had some trouble sleeping the past week or so, some weird tingling on the left side of my body (knee, front lower leg, then thumb) and some other odd little symptoms here and there (mostly in the evenings, I noticed), and of course, the usual left hip pain that radiates into my back and leg...but today and for the past couple of days, mostly, I've been pretty OKAY!

I haven't had to limp at all, which means my hip and knee are behaving.  I've noticed my mood has been really good, even with a lot of work on my plate at my job.  I've also made an effort to eat better, since I gained some weight and, as I like to say lately,

"I'm still wearing last year's cookies!" 

I am also able to stretch more regularly and do some isometric exercises each morning, which is great for building back lost muscle mass.

I feel kind of - I don't know - under control at the moment, which is a really great feeling for a fibromite.  It's really the best I can hope for, considering all the crazy things I've got messing up my body.

My magnet is currently set to the "I'm in a good mood" smiley face (rather than the "I'm in a bad flare frowny face).

So, fibromites and other kinds of "spoonies" out there, I have saved up some extra "spoons" for you and am giving them out to all those in need.  Please help yourselves!  Take from my reserves as freely as necessary to make it through the day.  You have been there for me, so I hope to be there for you in your time of need.

Photo credit: sfgirlbybay

Beercation 2009

What are your plans for the holidays?

I don't really celebrate holidays as much as I celebrate having time off and being alive. :)
But basically, we traveled and tasted a lot of beers for most of the time.

My husband Don and I traveled to Michigan on a road trip, enjoying our "beer-cation" by staying at various cities which are home to the various microbreweries we know and love, and some we never knew about before. We enjoyed many fine beers at: Founder's, Dragonmead, Dark Horse, Arcadia, Bell's, and almost went to 3 Floyds in Indiana, but they were closed. :( Nearer home, we also visited: Barley House, Rock Bottom, Lucky Monk, and plenty of our favorite beers from Binny's.

Ask me anything

Out of Order

I've noticed that, lately, I've been catching myself messing up some of my very important routine tasks.

This morning, I woke up seeing the contents of my open closet very clearly.  After the initial "wow, I can see pretty well" moment, I realized I'd slept with my contact lenses still in.  I don't do that.  I always take them out every night, with very rare, but always intentional, exceptions.  They are monthly disposables, but I still take them out and soak them each night, as I have dry eyes (as many of us fibromites do) and frequently feel irritation in my eyes.  The nightly refreshing helps a little bit.  This time, however, I got into bed without having realized that I'd completely skipped this step in my nightly routine.  I also noticed I was wearing my t-shirt.  I usually sleep naked.  Again, I do this with rare, but always intentional, exceptions.  This time, it was just completely overlooked that I'd left my shirt on for bed.

My nightly routine is a very complex sequence of events.  I have devised this sequence to help me ensure that each step is completed.  Over the past months and years, I've been using the same sequence, and it's been working fine... until lately.

Here's what I do each night before bed:

1. Check for / remove jewelry (one ring, earrings) and contents of any pockets (usually a tissue or two, sometimes my cell phone).  I put these away in their places immediately.
2. Use the toilet and wash and dry hands thoroughly.
3. Remove contact lenses for nightly soak in solution.
4. Fill my jelly jar with water for my medications.
5. Use a Pond's cleansing cloth to remove any makeup from my face.
   
6. Remove all night time medications from my basket and set on the right side of the counter (at the near edge of the counter).
7. Remove the morning medications from my basket and set them near the clock on the right side of the counter (at the far wall).
   
8. Use one inhaled medication (Serevent, for asthma maintenance).  Set near the morning meds, for a morning dose.
9. Use the other inhaled medication (QVar, also for asthma maintenance).  Put away in the basket for the following night.
10. Open the appropriate day of the week in my blue, nighttime medicine organizer while making sure I am on the correct day, and put all five meds into my hand.  Take each pill, one by one, with the water from my jelly jar glass.
11. Put the blue, nighttime medicine organizer back into the basket for the next night.
12. Move the jelly jar glass to the morning meds area on the counter for the morning.
13. Apply a gob or two of GenTeal eye gel into each lower eyelid.  Place the gel tube back into the basket for the next night.
14. Floss, if necessary.  (I don't always floss, but every few days is good.)
    
15. Take a swig of mouthwash, swish a bit, spit. (I like Tom's of Maine Peppermint.)
16. Squeeze out some toothpaste onto my toothbrush (Tom's of Maine Peppermint) and brush my teeth thoroughly.
17. Apply a dab of petroleum jelly onto my lips for the night and leave the bathroom.
18. On the way to the bed, the clothes come off and I climb into bed.  

After all that, I sometimes get distracted with other minor tasks I want to jot down before sleeping, or some computer task I want to do quickly, or I climb into bed and pick up my journal and review my day's experiences and symptoms.

Somehow, despite my fibrofog working constantly to thwart me and make me appear idiotic to any witnesses, I have successfully managed to keep to this routine and get it all done, mostly without thinking much about it.  Lately, however, I am troubled to realized that things are not running so smoothly on the Benia nighttime routine train.  Sometimes I do things out of order and miss steps, and of course it does not become apparent to me until it's too late.  

Is this it?  Am I losing my mind now?  Should I say goodbye to the last semblance of control that I thought I had over my body?  I don't like this feeling.  There is still some kind of me left inside this brain of mine, no matter how funny I sound when I try to speak or do stuff.  I noticed some interesting movements in the kitchen this morning, during breakfast preparations as well.  Heading to the fridge and not knowing what I wanted from there.  Walking away, wondering if I really meant to go to the cabinet next to the fridge for crackers?  No, it was mustard - it WAS the fridge.  I had to say it outloud so I wouldn't forget it by the time I'd opened the fridge door!  Plus I wanted my witness to remind me in case my thought escapes again at the worst moment.

I'm not ready to be stamped as senile or some sort of idiot.  Thank goodness I can still type some sort of sense down.  The luxury of time is not given during live action verbal communications, but here in my safe haven, I can type and retype and correct and change and think as long as I need to before delivering the final version of my perfected message.  My new dream for income is to involve my writing skills and allow myself the time to spend to make sure it is how I want it.  I don't yet have a plan, but it's bouncing around in my head as an idea.  Besides, if I ever get too slow-thinking for my dayjob, it's good to have a fallback career idea to try. 

formspring.me

If you were a tree, what kind of tree would you be, and why?

I would want to be one of the river birch trees in my own yard. They are lovely, sizable, and native to the area. Since my yard is all native plants, it supports a lot of native wildlife. I would love to stay and watch all the activities that go on in "Native Suburbia" all day long, while shedding bits of peeling flakes of my trunk, shading the front yard, and providing a woodland habitat for the plants beneath and the animals that visit.

Ask me anything

formspring.me

What's the nicest thing someone's ever done for you?

This is a boring answer, but the nicest thing someone has ever done for me is to care about me - genuinely. My husband Don is definitely one of those people and I would be lost without him. Thank you, Don!

Ask me anything

Bunny Versus Human Resources

Remember "Bunny"?  It's the homemade heat wrap I created from a soft pair of socks, some dry, white rice, and a little bit of sewing.  I pop it into the microwave for a minute and use it to soothe my neck, shoulder, back, hip, or whatever hurts most.  A few months ago, I brought Bunny to work so I would always have it ready at the office.  I have been using it all day long lately and it has been very useful in keeping me just this side of sane while trying to get my work done while dealing with the usual plethora of symptoms from Fibromyalgia, Chronic Myofascial Pain, Sacroiliitis, and whatever other typical things might be going on with me that minute (headaches/migraines, nausea, fatigue, IBS, etc.).

Last Friday, without any warning, I received the following e-mail message from the Human Resources Manager at my work:

"Hi there;

As you know, with cold and flu season upon us, people are generally germaphobic (with good reason).  I've been asked to respectfully ask you to not warm up your neck warmer in the microwave anymore.

My apologies for the inconvenience."

I just read it over and over, stunned.  My inner frustrations raged within me.  There was no discussion or hint of any sort of a problem - just the e-mail.

Okay, I thought, so maybe it's not apparent that I'm using this thing out of medical necessity, rather than for some sort of luxury or convenience comfort item.  I have mentioned my Fibromyalgia to the HR manager in the past, but it's a complicated condition and without having to deal with it herself, perhaps she'd forgotten.  After all, I "don't look sick".  Taking the high road, I decided to give her the benefit of the doubt and explain to her, in person, that I do need this heat wrap.

I walked into her office with Bunny in my hand and asked her "are you grossed out by this?" before she had any time to think about it.  She assured me that she is not.  She said that she had seen me walking around with it on my neck and never gave it a second thought, but she'd heard some offhand remarks from one or two people about it.  Then she got this "complaint" from the still-anonymous person.  I made it abundantly clear to her that Bunny is what allows me to work - I need to be able to continue using it, otherwise I would need to use a heating pad or something (however a heating pad is not as versatile as Bunny is for my ever-changing pain locations).  Bunny is the best option for my shoulder and neck pain, as well as my Sacroiliitis hip pain, since heating pads can't really get around those corners as well.

I wanted to be reasonable, because I know it's not easy to be the HR person involved in a dispute like this.  (Our company actually sells liability insurance, so it's even more apparent that disputes between coworkers can turn very ugly and expensive.)  She came up with the idea to use a Ziploc bag or some other sort of containment for the rice-sock for microwave heating, but needed to discuss the idea with another manager first.  Fine, fine - whatever it takes to keep Bunny available to me.  I even agreed not to use the microwave until I heard back from her.

Hours went by and apparently she'd forgotten to have that discussion until she saw me in the Ladies' room.  She announced to me that she forgot and was reminded by my presence.  I'm sure my expression was pathetic enough, but I also uttered a genuinely disbelieving "what?!" and my pleading "please help me" to make it clear to her that I was making a real sacrifice during all this nonsense.  I also replied to the e-mail she sent me, so she would remember that I was waiting for her:

"Please let me know ASAP on what conclusion you reach on this.  I'm always in pain and not having my warmed rice-sock available to me is not helping. :(

Thanks for your help.  Let me know if you need anything else from me, or want to discuss this further."

Well, when I finally heard back from her, it was, again, in the form of e-mail... 

"Lets do this...first of all, you still have access to the 4th floor, so go ahead and use the microwave down there - chance of being seen is far less.  Secondly, just for perception sake, could you put it/wrap it in something (like a plastic bag or other) when microwaving it?

Thanks."

She had mentioned, in an earlier discussion, that another microwave is available in another, very small office of ours.  It's on a different floor but I really think that's not fair to me at all.  The way I've been doing the Bunny warm-ups in the past is by putting it around my neck, grabbing my empty cup, and stopping at the kitchen on the way to the nearby washroom.  I'd pop Bunny into one of the two microwaves in the kitchen, set down my cup, take my washroom break, then return to fill my cup and take Bunny back to my desk.  I usually lean against Bunny in the chair for my back, or put it wherever the heat is most needed.

Her proposed change would entail my taking my key card with me (which I keep in my purse, so I never forget it), some sort of plastic bag or whatever, the cup, and Bunny when I need to take a washroom break.  I'd have to take the elevator down to the fourth floor (we're on the eighth floor), swipe my key card to enter the office of three people I hardly know, put Bunny in a bag, use their microwave (while they probably wonder what I'm doing there at all), then use the bathroom on either floor, return to the kitchen on the eighth floor, fill my cup, and return to my desk.

Does this seem reasonable to you?  

This is all for the sake of appeasing some anonymous coworker who apparently does not understand the germ-killing powers of the microwave oven.  This also puts me in the awkward position of having to kind of sneak the whole heating thing from someone who has not been identified to me, even though that person will very likely still see me using Bunny around the office, especially if it is a coworker who works near me or on the way to the kitchen and washroom.

Well, since I still wanted to remain reasonable and willing to cooperate, I decided to visit the fourth floor and give it a try.  Firstly, I had no container or acceptable bag.  What's acceptable anyway?  I'm dealing with erroneous assumptions of someone who won't tell me what exactly is wrong with putting my rice-sock in the microwave in the first place.  I asked the HR manager for a bag or something acceptable, since she's my only connection to the complainer.  She, also, had nothing handy for me to use.  She made and executive decision to allow me to use the fourth floor microwave that afternoon without any sort of bag or cover.

Well, I went to the fourth floor office and guess what - it was locked.  I couldn't even use my key card to get in.  So much for that plan...  (You can probably imagine my frustration at this point.)  I was sick of going to HR all day long and decided to skip it and just to bring in my own container on Monday morning.  I would still refrain from using the microwave without any container around Bunny, in case mysterious idiot were to see me and report to HR that I was not compliant.

So I just did without - for the idiot's and HR's sake.  Looking back, I should have just used our  microwave one last time (for my sake), but I'm such a nice person that I didn't risk causing any further trouble that day.  I was already very stressed and distracted already, and I didn't want to add any more crap to the pile.  (I was actually hoping that the stress could trigger a palpitation episode, so I could finally make use of this heart monitor of mine, but no luck there.)

This is all so very stupid.  I announced this to the HR manager during my most recent discussion with her about all this.  I even sent her a link to an article about microwaving the germs out of kitchen sponges, since I had mentioned this to her earlier and she said she'd never heard of anyone doing that.  I do this at home all the time and I thought most people did as well, but apparently that's not the case.  (She did not reply to that last e-mail.)

Well, today I brought in a large, oblong Glad container that is now dedicated for use with Bunny in the public microwave.  It seems to be just the right size to accommodate the whole thing and even allow me to close the lid on it.  I tested it at home a few times with success.  I have already used it several times today on my floor, here, at the office.  I have had no comments, strange looks (that I noticed anyway) or interactions with HR personnel (so far), so I'm hoping this is the end of this very stupid problem.

It still bugs me that the person who complained was given so much power over me.  Apparently, being misinformed about things allows one the right to remain anonymous, while greatly inconveniencing anyone they want.  That kinda sucks, doesn't it?  What if I had complained to HR that someone's checkered shirt gave me migraine auras, or that someone's perfume gave me headaches and made me nauseous, or that the conversations that people have around me distract me further from my work?  These are examples of real problems for me, yet I have decided that it would unreasonable for me to go to HR and formally complain about these things.  I've kept them personal or just dealt with them on my own.  I don't want to be seen as an unreasonably high-maintenance employee.  Nobody appreciates this, I'm sure, but this is how it goes.  We all know that life is unfair.

Someday, I may have to deal with the very real possibility that I am physically unable to do full-time work.  I am barely able to maintain my job now, but press on, for multiple reasons, including:

• health insurance benefits (very important),
• self-esteem and feelings of self-worth,
• distraction from my symptoms,
• keeping me in driving practice, and
  
• keeping my brain as fit as possible.  

It's complaints like this whole Bunny thing that remind me how fortunate I am to be able to work at all, and that I may have to cut back drastically on expenses to live without the insurance benefits and income that I enjoy today.  I know many of my fibromite friends are not so lucky, and are struggling with their symptoms and financial burdens.

I'm not looking forward to the day when I have to decide to stop working full-time, nonetheless, I know it is a decision I will likely have to face someday.  Until then, I am going to do what I can to help keep myself in at least the minimally acceptable condition that allows me to continue to feel somewhat human in this world.  If Human Resources, some ignorant coworker, or anyone else stands in my way, they better be ready for a fight because I will not be defeated easily.

Cardiologist Appointment Wrap-Up

I saw the new cardiologist last Wednesday morning.  He specializes in heart rhythm issues.  He was very nice and explained a lot of possibilities.

Basically here's the summary: He gave me a heart monitor to wear for 30 days.  I'm wearing it right now.  If I have any palpitation events (I will try to make it happen, if possible), it will record the electrical signals for a minute.  Then I call a phone number and put the receiver on the playback speaker so they can study it.  When I see the doctor again in January, he'll have the study results and can tell me more about what particular kind of problems I'm having.

Based on my past heart history and test results, he is speculating that I have a certain kind of supraventricular tachycardia (SVT), but there are several subtypes.  He is further speculating that the kind I have is due to an electrical circuit that has grown on my particular heart (he says as much as two-thirds of the population have this circuit) and that in my case, it is causing these sporadic tachycardia events to occur.

There is an invasive study that can be done to confirm AND FIX this particular circuitry problem, and there are very few complications.  He gave me a handout about this electrophysiologic (EP) study, but basically, they go in through a vein and try to force the arrhythmia electrically to confirm the problem.  If they can confirm the problem, they can also fix it by breaking the circuit using radiofrequency catheter ablation.  This procedure uses a freezing (or heating) technique to make the tiny, but necessary change to stop the problem.  Some folks use heat, but he recommends using the freezing technique, because it's reversible if any mistake is made that might affect the rest of the heart area.  Heat is not.

There are also drugs that can be used to control arrhythmia, but they have side effects and all that jazz.  I'm not really in the market for adding more drugs and side effects to my repertoire.

Now, it is entirely my choice about what I do or whether I do anything at all about these palpitations.  IF he can confirm what kind of palpitations I'm having, and if they are the kind he thinks I'm having, there is no danger of damage to the heart or anything and it is more a matter of personal choice and a decision about whether these are interfering with my life or not.

Years ago, one of the episodes I remember having seemed to be triggered by my jumping rope on the driveway.  So yesterday, I grabbed my old jump rope and, believe it or not, I whipped out a few minutes of fast jumping in the garage, trying to get the heartbeat to flip.  As I predicted, my knee buckled, but I continued a little longer, trying to get some test evidence.  It was all for naught.

I've also been trying to trigger palpitations with some quick sniffs after being out in the cold.  I noticed that sometimes I'll have a short episode from doing that, but the heartbeat returns to normal after some coughing - usually only about a minute later.  I sniffed and sniffed and sniffed, but so far it hasn't worked.

It's odd to be wishing for an episode of tachycardia, but it would make wearing this stupid heart monitor worthwhile.  I hope something happens soon.

If  you're interested in learning more about these heart rhythm problems, here is a great page with animations that can help.

Yo Yo Yo!

I turned a negative into a positive today.  I was up at 4am today (thanks to my husband's pager for work) and was not able to fall back asleep.  So, I got up and started my day.  Since I usually don't get up until 8am on workdays, I had no excuse not to do all my stretching and exercises this morning... and that's just what I did. 

I did my usual stretches, then hopped onto my elliptical machine and did 10 (slow) minutes.  Then I stretched a bit more.  Then, since my knees have been bothering me so much lately, I thought I would do some strengthening around the knees.  I put 10 pounds of weight onto the knee lift thingy on Don's weight bench and did 10 lifts.  Then I stretched a little more.  I'm so proud of my piddly exercise today.

Then I weighed myself and although I'm not too surprised, I'm disappointed.  I've been crazy with the food lately, especially sweets and treats, and it shows.  My fat pants are not so loose anymore and my skinny pants are just lonely.  I don't know if the Doxepin is behind this, or if I'm just having some sort of eating disorder or something, but this is getting ridiculous!  As I type this, I'm tempted by cookies.  Why?!!?  I dunno.  They are just beckoning to me to enjoy their deliciousness.  Maybe I can at least hold off until after lunch.

I'm getting a little frustrated with this yo-yoing up and down weight with me.  I was about 122 lbs. this time last year.  Today, I'm 140 lbs.  Of course, last year's dramatic weight loss was due to the yeast-free diet my fibro doctor had me on.  (It actually made me feel worse so he insisted that I stop it.)  I'm hoping that hating my weight will help motivate me to get back to eating better and doing more regular exercises.  Even if I only do piddly routines, if I do them daily, I'll be ecstatic.  I am focusing most on stretching and re-building muscle, since those are most important for us fibromites.

Ugh, those cookies!!  No, I mustn't!

This is definitely a challenge.  I hope that confessing this all to the public will help me stay true to my goals.