Saturday, December 19, 2009

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.

Friday, December 18, 2009

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!

Monday, December 14, 2009

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.

Friday, December 4, 2009

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.

Tuesday, December 1, 2009

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.

Monday, November 23, 2009

Discombobulated

In my brain's apparent quest to make me appear insane and constantly in mental anguish, I find that I cannot seem to stick to a single method of organizing myself. I am constantly revising the way I handle reminders and ways to keep track of appointments, tasks, and projects. The last 15 ways I've invented were supposed to each be THE ONE best way that I could use from then on. However, I keep thinking I can improve my methods by trying something new.

As a result, I feel discombobulated as I keep having to transition from one method to another. Is the computer calendar and task list the best? Or is jotting down a note wherever and whenever it comes to mind a good idea? Should I try to maintain the calendar with updates from those notes? Do the notes go in my pocket, or my purse, or do I send myself an e-mail or a phone reminder? Am I journaling my symptoms or posting them in my blog? I also have a dedicated notebook for my doctor-related notes and questions, so I can take it with me during appointments.

Sometimes I feel calm, cool, and collected about juggling all my responsibilities. Other times, like today, I feel frustrated at my lack of organization of my organization methods.

Got any tips on the best way to keep all the organization methods from overwhelming your senses?

Friday, November 20, 2009

Stress and Bad Habits


I've been noticing some icky trends in myself lately.  I've been picking at my fingers like mad, lately.  I am trying to quit, but I'm worse than ever these days!  I am hoping that announcing this the public will help me to quit this terrible habit.  I also just found a website that addresses this problem.

I've also been having cravings and overeating, or at least I think I am - so then I try to balance things out by skipping meals if I can stand it (not very often).  I've got this insane addiction to natural peanut butter that has had me reaching for the jar every morning after breakfast.  (Luckily, we ran out!) A few days ago, I grabbed a bag of chips and really had at it.  I was not hungry, but I craved the salt and was unstoppable!

My fibrofog has been worse than usual this week.  I noticed more than a few times when I had to eat crow for bonehead oversights at work and have had a particularly difficult time staying focused on the more involved discussions.  Working in IT, there are plenty of abstract ideas that require careful following along in order to be of any use to the project.  Too often I have found myself just "la la la"-ing through the hard parts, only to have to ask for concepts to be reviewed.  I don't feel too badly, though, because my asking for "a clean run-through" of a concept helps the other participants to understand the plan and their roles.  I just wish I didn't HAVE to ask because I missed something important.

As you may have guessed by now, I've also been yearning for some down time.  I have been stressed at work and wish I had more sick/vacation time (I'm all out for the year).  I feel like a day at home, alone, being quiet and still, would be helpful in recalibrating my system.  I already have plans for tomorrow, but I am hoping maybe this Sunday I can finally relax at home a bit and find a couple more spoons.

I don't like the feeling of not being in control of what I'm doing.  I think general stress is pulling me in too many directions at once.  Does this happen to you, fellow fibromites?  Can I blame Fibromyalgia or my drugs, or is this just some ugly side of myself that I have to admit to?  How do you get through these episodes?

I will not give up fighting these unhealthy habits, but I do seem to be weak lately.

Thursday, November 12, 2009

Heart Problems

I declared yesterday a "good" day and invited my husband for a dinner date while I'm feeling good.  So what happens?  Not long after the soup arrives, my heart flipped into a pounding palpitation that ended up lasting through most of the night.  It made me feel like there was this pressure on my throat and chest, and the beat was visibly moving my body.  I continued to eat dinner and hope it would flip back to normal soon.

We got home and went to bed a bit early so I could rest.  As the hours wore on, I started to develop pains in my left shoulder blade and left arm, and endured that odd, pounding discomfort in my chest and throat.  Sleep would not come for many hours.  I had been able to focus on the proper rhythm before and have the heartbeat return to normal, but it just wasn't happening this time.  All through the night, I wondered when I would have to make the call to get up and head to the ER to try to fix it.  Ultimately, I decided that if I still had the palpitations in the morning, I would go to the hospital instead of work.

After a fitful night of mostly unrest, I finally found relief in the early morning hours - probably somewhere around 4am or 5am.  Thank goodness.  I was finally able to get a couple hours of sleep so I could get to work.  I have already used up all of my sick days for the year, and have alloted my few remaining vacation days, so taking a day off right now is not an easy option.

I assume the type of heart arrythmia I experienced was atrial tachycardia, since that's the diagnosis I got after my first episode at age 17, when I went to the ER to have the proper hearbeat rhythm restored with IV drugs.  I went to a cardiologist not long after that first episode and was checked out with EKG and an ultrasound machine.  Everything seemed normal.  There was no diagnosis.  I was sent home with "some people seem to be born with a tendency to have these" sentiment, and instructions to avoid caffeine.

After 30 years, I've had maybe about 50 episodes total, but most of them only lasted a few seconds or minutes.  I remember one major one that lasted through a movie about 10 years ago.  Another one that started after jumping rope.  Now this one.  I don't know how long to wait until going to ER for these things, because I always expect them to be short.  On top of that, last spring I went to the ER for breathing issues (not heart) and they made me take a stress test with ultrasound - and of course, everything looked just fine with my heart, even though I was having trouble breathing.

I have decided to see a cardiologist anyway.  I figure at least they can see if things have changed, take tests I hadn't had before or that may be more accurate today than they were back then.

Today I am feeling the after-effects of the episode: my throat and chest hurt as I breathe in.  They feel like their elasticity is lacking.  Maybe the fibro is making my muscles "remember" what they endured for so many hours.  I noticed that my body remembers pain for a long time.  Pokes and little dings hurt for minutes after the contact is done.  It's the same with sounds.  Sometimes sounds hurt, and it continues to hurt or echo in my mind after it's over. 

Anyway, I'll post an update once I get an appointment for a heart specialist and receive any test results.  I hate to hope for a diagnosis of some sort, but it's frustrating always having everyone tell me I'm fine and shouldn't be having problems.  (Fibromites should know exactly what I'm talking about.)

Monday, November 9, 2009

Spoons: Lost and Found

Most of us Fibromites and chronic pain sufferers (aka "spoonies") are familiar with the Spoon Theory.  If you're not, click on the link and read the little story that helps explain what it's like to have a rationed amount of energy each day.


Last week, there was a lot going on at work, and I started using up too many of my spoons here and there.  By Friday, I was dealing with a deficit.  I was out of energy and couldn't wait to go home and just crash.  Luckily, my boss recognized all the extra work I'd put in and urged me to leave early on Friday.  I left, ran an errand, and crashed on the couch with my heating pad and my blanket, zoning out to reruns in my Tivo's Suggestions.  I was tempted to do some reading or journal writing, but I was so wiped out and dizzy that I could hardly remember my own name, so I knew that would be a waste of effort.  I got as comfortable as possible and zoned out for several hours.  Lying still minimized the vertigo that was plaguing me at, literally, every turn.

When evening came, I too my half Ambien and slept as long as possible.  When allowed, my body will try to sleep for about 11 or 12 hours.  I was still exhausted on Saturday, but the weather was nice, so I took advantage and took a little walk with Don around the neighborhood.  I had to stop a couple times, and I felt old and feeble about it, but I made it and got some sunshine.  I was able to read and pushed myself to do some minor cooking and cleaning that evening.  Then I slept as long as possible again that night.

By Sunday, I must have found some of my lost spoons because I was ready to actually shower and go out. :)  I noticed less vertigo/presyncope on Sunday morning, so I jumped at the chance to go out for brunch and beer.  We enjoyed the sunshine and walked around town a bit, too.  We even had ice cream and played chess at our local Oberweis before doing the grocery shopping and heading home.  It was a very full, but worthwhile day and I'm glad I was able to partake.

Sometimes those missing spoons are just put aside for another day, I guess.

P.S.  Thanks to NicnBill for the teaspoons photo.

Wednesday, November 4, 2009

The Wizard of "Ow!"s

This morning, from bed, I told Don that I feel a lot like many of the main characters from The Wizard of Oz.

I feel like:
  • The Tin Man - because, although I do have a heart, I am so stiff that I feel like I need oil to move
  • The Scarecrow - because my fibrofog leaves me wishing for a brain (I could hardly remember this character's name to explain)
  • The Lion - because, although I put on a brave face, I am scared
  • Dorothy - because, I was still in bed and could not bear to leave to get up and get ready for work in my condition.  "There's no place like home!"
  • All of the above, again - because I want to go see the Wizard, who will cure me of all my "ow!"s
 Don was very quick to add that the lesson learned from the entire story was that that the Wizard didn't have any magical powers, that it all came from inside.  It's true - it's all in the attitude and perspective.  I hope to improve my outlook.

Thanks, Don!
 

Tuesday, November 3, 2009

Friends in Need

I'm a big proponent of reaching out to others for the somewhat selfish goal of feeling good oneself, and for the altruistic goal of making someone else feel good.  I'm also a big proponent of killing two birds with one stone.  I have found the secret to happiness.  It lies with the spirit of giving and getting at the same time.

Yes, I have unmet needs, and there are times, when I feel especially shitty, when I seem to have nothing left to give anyone, not even to my own self.  These are very low days for me.  But I also have some reasonably okay days, too.  What I've discovered is that there are some things that I can give someone while I am able that can help me feel better on my worst days while also helping someone else at the same time.

Giving something to a friend in need is actually a gift to my future self!  It's a gift I can rely on to help keep me out of that low pit of pitifulness when things seem to be falling apart in every single way and then some.

Now, I'm not talking about giving millions to charity or buying someone a requisite* birthday gift.  (*I'll share my philosophy on gift-giving holidays in another post.)  The kinds of things I'm talking about are:
  • a laugh
  • a hug
  • a few minutes of kind understanding
  • a massage
  • an inexpensive but useful and appreciated physical item (like a journal)

So, this blog post is my gift to some of my fibro friends who really, really need right now: SarahBear & Coffeesister.

Sarah is young and has Fibromyalgia.  She's had this condition for years and is not getting appropriate treatment.  Anyone with Fibromyalgia knows how challenging it can be to stay motivated while in constant pain and exhausted (not to mention dealing with the myriad other symptoms that FM brings).  She lives in a remote area with no health insurance, and also has very limited funds.  But she's a go-getter and she has a plan.  She believes that a Fibromyalgia & Fatigue Centers, Inc. treatment center a few states away can help her significantly, if only she could raise enough money to travel there and pay for the treatments.  She knows it's not a cure, but it's better than the care she's getting now.

I believe it's a good plan, but it's one of those long shots.  She can't do this alone, so if you're reading this post and have a drawerful of change reserved for the vending machine, please consider giving just a buck or two to Sarah.  Here is the Facebook page describing her mission.  She has a PayPal account set up just for this goal and she is extremely grateful for any bit she gets.  She's also on Twitter if you're interested in following her tweets.

Coffeesister is the alias to a vibrant woman named Dorian.  As you can guess, she loves coffee...
(|_|*cheers*|_|)

...but she's also another victim of Fibromyalgia.  She and her honey are on a mission to move.  For most folks, moving is a bit of a pain in the ass, but it's not that big a deal.  It's a lot more challenging and complicated when you're broke and time is not on your side.  But I believe they can do it.  Dorian is creative and wise, and she's eking out usefulness from every idea and penny that comes her way.

Like Sarah, she's very grateful for all the love, whatever form it takes.  Again, if you can spare a couple bucks to help Dorian and Rhodester get to San Francisco, you will definitely be thanked profusely for it.  Here is their lovely PayPal account.  And here is Coffeesister's Twitter account.

Give your self some cheap love.  No, no - not like that!  Make a donation, or simply reach out to these wonderful people and share something personal and useful with them.  It does not have to be money (though they sure won't mind some) - even a kind word or two will do.  They both have blogs and every blogger loves getting supportive comments.  (EVERY blogger!  *wink, wink*)  They're both fine individuals and just need a bit of a boost.  Anything you can offer them now will go a long way toward keeping them afloat and will help you feel all warm and fuzzy inside at the same time.  Win-win!

I hope I've inspired you to look for opportunities to feel good about yourself and help someone when you can.

Thanks for reading.

Sunday, November 1, 2009

New Table Dressings - Part 2

So... I've made some changes to the way my blog looks.  I managed to maintain the same overall format while trying some new colors and stuff.  What do you think?

Tuesday, October 27, 2009

Fibro Sucks for Having Arguments

Last night, Don and I were discussing minutiae (again) and came across a point of contention between us.  We love to discuss controversial topics and compare our thoughts on things.  Most times we agree (almost sickeningly, according to some spectators), but there are times when we just butt heads.  Both of us desire, very strongly, to ensure that our respective points are clearly understood by the other party, in the hopes that the disagreement can be resolved simply by clarifying our points.

Anyway, we got into this heated debate and I realized how shitty it is to be the one with mental faculties compromised.  Such a disadvantage can cost an enthusiastic debater, not only the argument, but some pride and self-esteem, as well.  I can usually hold my own, but last night I observed my cognitive shortcomings getting in the way of my communicating my oh-so-relevant points.  It was basically like this:
Don: "You said that the only reason..."
Benia: "No, That's not what I said!  I never said 'the only', I--"
Don: point #1, POINT #2...
Benia: "WAIT!  Let me FINISH!!"
Don: "Okay, what?  Say what you gotta say."
Benia: (thinking)...
Don: POINT #3--
Benia: "No WAIT!  I'm NOT DONE!!  That's NOT what I SAID!!  LEMME FINISH!!!"
Don: (waiting patiently, with an impatient sigh and some not-so-subtle eye-rolling)
Benia: "Um.. so..." (choppily bodged together sentences of barely acceptable English, forming some semblance of what I really wanted to say, with pauses unintentionally interspersed)...
Anyway, you get the picture.  The way Fibromyalgia affects my cognitive abilities, especially my ability to find the precise language I need, and the time it takes me to find those words, really....um... frustrating.... GRRR!   Ya know?

The fact that I have the ability to take my time and ponder what I want to express using written words is my saving grace.  If I didn't impress myself with they way I communicate in writing, I'd be convinced that I'm stupid and give up on a lot of things.  Thank goodness I can take as long as I want (within reason) to find a word or phrase in e-mails and blog posts.  I'm practically a friggin' genius on paper.  But when I open my mouth to speak, and discuss things on the fly - oh who knows what I'll come up with?  

Most times, when live discussion is pressuring me to keep talking, I find myself torn between two words or phrases (sometimes they are both acceptable, but sometimes they are not) and they end up coming out morphed into some nonsensical hybrid, then I quickly correct myself by choosing one or saying both correctly, to scoop back up some of my dignity in front of the other person or people.  

Other times I just wait and wait for that word or phrase that I KNOW is hiding in that dusty brain of mine, but it doesn't come until the conversation moves on to a different topic, has completely ended, or sometimes not until days afterward.  Yes, sometimes, days after conversations I've had, I still struggle to find the right word or phrase, or the name of someone or something.  It's like unfinished business and it nags at me and distracts me from the task at hand.  I usually give up if I can't figure it out in a few days.  I figure it will come to me when it's ready - so why bother worrying over it?  I'll be driving to work one day and suddenly exclaim in victory "bergamot!" (and smile the rest of the ride).

I'm glad I got this off my chest.  I know some of you will be able to relate.  If you have anything you'd like to share about it, I would welcome your version of this fibrofog.  (Hint: Click "Comments" below and tell me I'm not alone on this!)

Tuesday, October 20, 2009

I Missed You Last Night, Ambien

I pulled a fibrofog and forgot to take my half pill of Ambien (Zolpidem) last night.  It's the first time I've forgotten to take it in a long time - maybe EVER, since I started taking it.  What a shitty night I had.  I must have woken up about a thousand times.  I did dream some crazy stuff (very detailed, as usual) so I know I got some sleep, but it was such a long night.

I sure did miss my Ambien last night.  Never again will I forget!

Thursday, October 15, 2009

Another Diagnosis: Sacroiliitis

I met with my fibro doctor last Tuesday.  Luckily, I had the forethought to try to jot things to discuss down on paper, starting a week or so before my appointment.  I had a whole page of topics!  Here's a wrap-up of the major points we covered.

I explained about my hip and lower back issues. The doctor diagnosed Sacroiliitis and gave me a special velcro belt that helps tighten the hips.  It feels good.  I am to wear it as long as it feels comfortable, to help align the sacroiliac joints.  He even measured my legs to see if they might be different sizes, which can lead to this problem, but they are the same length. He mentioned that Sacroiliitis can be a symptom of Ankylosing Spondylitis, but didn't seem too concerned at this point.  (I'm still concerned, but we'll see how it goes.)

I told him about my screaming left knee pain that comes on sometimes, especially in the evenings, while I'm just sitting on the couch.  He named it Patella C-something (I couldn't spell it - maybe this is it?) and said to avoid sitting on my leg or legs and to also avoid crossing my legs while I sit.  These are very hard on the knees, he says.  He also said skipping steps while going up stairs is really bad for that, too.  I definitely don't skip steps, but I noticed this week that I do try to cross my legs a lot while at work.  I've been stopping myself, now that I know it's bad for my knee.

I told him about my frequent presyncope (feeling faint) and how it happens when I change directions or speeds.  He was initially concerned about POTS, but he tested my resting blood pressure (which was normal - not low) and pulse before and after some mild exercises.  My resting pulse was somewhat high at 92, but the increase after activity seems normal. I can't remember exactly, but I think he attributed the high resting rate (and my sweating) to the Pristiq, and the Doxepin may have something to do with the dizziness and lightheadedness.  At any rate, he did not seem too worried about it after conducting the little test.  I guess I still don't know exactly what's going on with this.

Doxepin is the stuff I decreased from 2 capsules nightly to 1 capsule nightly, because I was getting a crazy sweet tooth and getting fat.  However, it should help me with pain, so he suggested I add increasing back to 2 for 5-7 days to my action items in my WRAP, especially if I notice I'm not getting sleep.  He also said I could increase it for worsening of pain, especially in the wintertime, when fibro tends to get worse.  I just need to be aware of the side effects and keep them in check.  I am currently making an effort to eat healthy foods and cut down on indulgent sweets.  I actually lost a couple pounds counting calories, last time I checked. 

He wasn't too worried about my using Tramadol for pain about once daily.  I have been taking it most days in the mornings, when I feel worst.  He says that's not a big deal.

I didn't realize it until it was too late, but I completely forgot to mention the crazy tinnitus going on in my left ear all the time.  Oh well, I'll jot it down for the next time.

I guess that's it for now.  I just wanted to write something down to help digest it all, and share it with you at the same time. :)

My next appt. is Tue. 12/22/09 @ 8:20am.

Monday, October 12, 2009

Husband in the Hospital

This past weekend was a harsh reminder that the other half of my little family - my husband Don - is also affected by a chronic, incurable, and serious health condition.  He has been diagnosed with Crohn's Disease for 16 years now. 

When I first met him about 8 years ago, his condition was somewhat stable and being well-managed with Remicade infusions every few months.  He would still go through cycles of feeling better, then worse as the drug wears off , but he has thus far been lucky enough not to have required any surgery to resection his intestines, as many Crohnies have.  (We both dread the day when that has to start.)

After a terrible night of vomiting and unusually excruciating pains, he told me Saturday morning that he "might have to go to the hospital".  Needless to say, I jumped into action and was ready to take him in a matter of minutes.  He couldn't even keep a sip of water down without throwing it back up in only a few minutes.  All signs pointed to an intestinal obstruction, which is serious business for anyone.  I took him to the ER Saturday morning.  After the usual tests and waiting around for hours, the ER doctor recommended he be admitted, so he was moved to a different room and stayed overnight.

The obstruction does not seem to have resolved itself as of yet, but at least he can eat without vomiting and the pain is not as awful as it was before.  Treatment, per his own gastrointestinal specialist, is to try to reduce the inflammation to help open up a likely narrowed portion of small intestine with an antibiotic.  He was on liquids only Saturday through Sunday morning, but is now temporarily on a low-residue diet until this obstruction resolves.

The entire time was in the hospital, poor Don was worried about my health and comfort.  ♥ 

But my health came second to his during this time of emergency.  I didn't care about my needs - I just wanted to make sure he was okay and had some company during this scary time.  I skipped breakfast and my daily supplements and stretches Saturday morning, and was doting on him as he lay in the hospital bed, sometimes putting myself in awkward positions or standing for a long time.  I would tend to my own needs later.  I am surprised to notice, however, that despite my own neglect, my left hip didn't feel bad at all, I wasn't noticing much dizziness or fibrofog, and I hardly noticed any of my usual pains and problems.  I think my body responded to the emergency to graciously allow me to focus my attention on what I decided mattered most at the time.  I suspect the problems were there, but I didn't allow them the attention they usually get because I was determined to help my husband in any way I could.

As expected, today, I notice a heap of exhaustion, plenty of moments of presyncope (dozens of episodes already this morning) and more pains in my hip, back, and legs.  It was interesting, though, to notice that my pains and fatigue temporarily subsided during a time of crisis.  I wonder if I can tap into that need again - perhaps the next time I'm having my own crisis of extreme pains. 

Have any of you noticed that your Fibromyalgia symptoms subside during emergencies or special circumstances, despite any added stress?  Have you ever been able to control your symptoms when they reach crisis levels, by using some mental technique?  I'd love to read your experiences.

Thursday, October 8, 2009

Irritability

I know I'm having a bad day when my usually (somewhat) polite demeanor changes to inconsolable bitch.  One of the nicest people who knows I have a chronic pain condition asked me if I'm having a good or bad day and I just rudely retorted in despair.  This is my cue that I'm having a bad day.  I must consult my WRAP and see what to do...

I regret snapping at this person.  This is someone who is actually concerned for my well-being and I returned the favor by barking back with my discontent.  She deserves better. 

I'm sorry if you have ever been, or will ever be, the victim of my irritable mood.  Fibromyalgia is partially to blame, but I also take responsibility for not being aware in time to stop it from happening.  I will strive to do a better job of recognizing my lousy mood and try to prevent it from sucking you into the pain pit with me.  It doesn't help to have us both in there, and I know you'd help me out if you could.  Thank you for taking an interest in me.  I appreciate it.

Wednesday, October 7, 2009

New Table Dressings

I'm a bit bored with the look of my blog and am currently shopping around for and brainstorming new design ideas.

Stay tuned for a new look here in the coming weeks...

Sunday, October 4, 2009

Little Victories

I vacuumed today.  That's right - me.  It wasn't the whole house, but I managed to do the entire top floor of my house.  This is a big deal for me.  I smiled while doing it and even caught myself cheering a few times.
"Yay, I'm vacuuming!"

Vacuuming is a task that I avoid most days, because it is so taxing on my entire body.  Fibromyalgia leaves me weak, fatigued, and in pain all the time.

I expect a bit of a flare up after today's exertions, but I'm very, very pleased to be in a cleaner living space.  This is one of those things that I deem to be worth a flare.  It makes me feel a little better to know that I was able to perform this task - to overcome this challenge - and enjoy the results.

With my husband and I both dealing with chronic conditions (he has Crohn's Disease), we have been reduced to living in what we call "squalette" (not quite squalor, but reminiscent of it) for many months.  In fact, the vacuum cleaner has been upstairs and waiting for use for several weeks now.  It's been a nagging reminder of a chore that must eventually get done.  I'd resolved to be the one to do the vacuuming this time. 

Finally, today, I had my chance at noon.  I'd just gotten past my morning stiffness and pains, so I took action (before I'd change my mind).  Now I'm enjoying the cleanliness (while it lasts) and the calm before the storm (flare).

Ta-da! :)

Do you have a little victory you'd like to share?

Tuesday, September 29, 2009

Lots of Presyncope and Tinnitus

I've been dealing with lots of frequent bouts of presyncope lately.  Basically, I move a little and have a moment of feeling faint. 

For instance, when I get up from my work desk to go to the restroom or to the kitchen for a drink, and by the time I get to the first corner, I feel a moment like I  might faint, but I don't.  I've never fainted (that I can recall), so I'm not sure if this is the best description, but I feel like I might lose consciousness - just for a brief moment - many, many times a day lately.  This has been going on for maybe 2 or 3 weeks now, or maybe longer.

Other times I notice this feeling including: in the morning, when I first get up and start walking around, especially once I start descending the stairs (very slowly); while doing my stretches; when I get out of my car after arriving at work or home or wherever; getting off the elevator at work; just walking.

Sometimes it happens randomly while I'm just sitting and working at my computer.  I haven't narrowed it down to exact movements, but perhaps it might have to do with raising my arms (to put my hair into a pony tail or bun, or to stretch), or turning my head.  I'll have to keep watching for the details to see if I can figure out the pattern.

I've also been having tinnitus, especially in my left ear, a freakin' LOT for the past month or so.  I mean, like mad!  I hear this loud ringing that suppresses other real noises in the world around me, so I can hear the ringing better (great...).  It's this high-pitched tone, kind of like after a loud rock concert, but it just comes and goes all day long, as it pleases, making me act like a deaf, old granny as I cup my ears to better try to hear what those quiet people are saying to me. 

SPEAK UP, FOLKS!  I'm not kidding; I seriously have trouble hearing you!!  I'm forever turning up the volume on the TV while my husband and I watch together.  This, of course, confuses the hell out of him, because I am also forever turning down the volume on the stereo in the car.

Anyway, I am not sure how these symptoms fit into the Fibromyalgia swirl of symptoms, or if they are related to each other.  Of course, I'm concerned that there is some new problem that needs to be addressed, like low blood pressure, arthritic issues, heart problems, whatever... I just have to put all the worries aside for now, until my doctor can assess them, and just deal with the day to day challenges, one at a time.

Do you have these symptoms?  Have they been attributed to Fibromyalgia or other conditions?  Did you get treatment?  I'd love to hear from you, dear readers.

Thursday, September 24, 2009

Some Things are Worth a Flare

Being a fibromite means being fragile.  I'm sensitive, I hurt all the time, and my muscles can't take much activity due to a chemical inability for them to access sufficient ATP from food.  As a result, I'm told to limit my activity, get plenty of sleep, and make sure I relax and try to reduce stress.

As a general rule, I follow this advice and try not to awaken the "fibrobeast" if I can help it.  However, living cautiously and carefully all the time kinda sucks.  I'm not going to spend my time on this planet trying to remain as comfortable as possible all the time.  I only get one chance to live life, and sometimes I am going to go ahead and risk a fibro-flare for the sake of fun and rich, fulfilling experiences.  That's right, some things are worth a flare!

Last week, I had a very busy week that was hard on my frail little body.  I had long days and little sleep.  Saturday, however, I went with my husband Don and enjoyed an annual beer fest a couple hours away (Great Lakes Brew Fest in Racine, WI).  It was a long day of concentrated fun, but WELL worth the flare I'm suffering now.  We had so much fun, we're planning on attending again next year.



I encourage my fibrofriends to prioritize life's experiences.  Don't waste the rest of your precious days wallowing over the life sentence that a Fibromyalgia diagnosis gives.  Consider making the most of life and have some fun!  You can't do it every day, but if it's a rare opportunity, it might be worth the flare.

Saturday, September 12, 2009

Split Personalities

"Acting" with Fibromyalgia is a great post from the blog "Just Breathe" by one of my fellow fibromite bloggers - VinaMist.  She nailed this phenomenon right on the head!
"It amazes me how people like us with chronic health conditions have an "acting" mode. Where we can just snap into this other person outside the home and inside our homes we crash."  
It's so true.  In fact, I'm due at a party in a couple of hours and really don't feel like going because I am not up to being "on" and behaving "normal" for other people's sake.  I have been in pain for several days and haven't had time to really crash yet.  But I hate to cancel at the last minute - I just don't want to be one of those people who lets others down (typical fibro personality). 

So now I'm faced with this choice: do something to please others, or do something that helps me.  I hate this choice.  I suppose I can push off the crashing for one more day.

I'm going to have to put on the Happy face now...
(Thanks to Maddie F for the photo.)

Thursday, September 10, 2009

Am I "Hip"? (Sacroiliitis and Ankylosing Spondylitis)

What a couple of tongue-twisters, eh?  I learned about these two conditions recently while looking into possible causes for my recent bouts of pain in my left hip area.

The left side of my very low back and hip, down to the back of my left thigh, have been bothering me a lot lately.  My last flare, which lasted about two weeks, centered predominantly on pain stemming from, and probably referring from, the top of my left hip bone.  I remembered my doctor telling me that my sacroiliac is probably to blame for what had been diagnosed as sciatica, but that pain is sudden, lightning-like, and remarkably intense (enough to startle me visibly).  I usually get what I understand to be sciatic pain in the back of my right thigh, but similar lightning-like pains have jolted me under my right forearm and wrist, and also the right side of my neck.

Getting back to the left side, I went on a research hunt for information regarding the sacroiliac.  The following link has a great description of sacroiliitis (inflammation of the sacroiliac) and its symptoms.  There is also a nice graphic showing the sacroiliac joints.  Basically, they look like two fractures in top area of the hip bones, connecting the sacrum (tailbone) and each ilium (hip bones).

Sacroiliitis Info

Except for the eye problems (though I have had some minor problems within the last few months, if I remember correctly), the short list of symptoms for sacroiliitis seems to fit.  I have been "hot and cold at the same time" as I like to describe it, for pretty much most of every single day for months now.  I shiver at the slightest breeze, even, and especially, if I'd just been sweating from feeling too hot.  At night, I pile on three layers of sheet, blanket, and comforter to warm up, then wake up in a pool of sweat.  I simply cannot sleep if I shiver.  Could this be the "fever that appears quickly"?  I can only speculate.

The rest of the symptoms listed surround pain.  Of course, pain and weird symptoms are already part of the Fibromyalgia, so it's hard to say with any certainty that another condition like this could be overlapping with if the symptoms include pain. 

Ah, such is the life of a fibromite: always wondering and trying to hunt down answers.

The Ankylosing Spondylitis (AS) research actually collided with my Sacroiliitus research.  I remember seeing "Ankylosing...(something)" in Fibromyalgia support groups and other forums online.  I had no idea what it was and could hardly remember the name, but, skilled little researcher that I am, I found it and learned all about it.

Ankylosing Spondylitis (AS) Info

"Ankylosing spondylitis is a chronic inflammatory disease that primarily causes pain and inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also cause inflammation and pain in other parts of your body as well."

It seems to me that sacroiliitis could be considered an earlier stage of AS, if it were to progress.  AS can result in bony growth at the vertebrae, causing fusion of the bones.  In turn, this means the poor AS patient has reduced mobility and a higher chance of fracture.  I've seen some very drastic photos of people with very advanced AS (AKA "Bamboo Spine" - yikes!), and they are very hunched over.  VERY.  (Don't look unless you can handle it.)

It's a scary prospect to think about that I may have or be on my way to having either of these conditions, but I've always been ready to face my fears in favor of responsible action.  I can handle the diagnosis; I just want to do what I should to keep things from getting worse and (dare to dream) possibly heal or reverse whatever is wrong.

Since I had had many MRIs, CT scans, and x-rays in the last few years, (and who among us fibromites hasn't?) I also started reviewing my own test images to see if any differences can be spotted at the sacroiliac joints or spinal bones.  From what I've read, these conditions are not easily spotted until several years of damage has already occurred, and there is no difinitive testing that can concretely diagnose either.  Figures, right?

Well, the good news is, my untrained eyes do not notice any obvious bony growths or inflammation.  Then again, I didn't have the appropriate tests, targeting the specific areas.  The picture on the left is an x-ray taken during a CT scan on 3/8/08.  The picture on the right is an x-ray taken during another CT scan on 6/5/09.  You can clearly see the sacroiliiac joints in the first picture, but it's a bit harder to see in the second one.  Both times I had to drink that nasty gastric dye which makes my colon look nice and bright, but blocks the bones a bit in the later x-ray.

Anyway, I will have to mention my hip pains to my doctor the next time I see him, in case he can find any reason to worry about either of these conditions (or anything else).  If you have had either of these conditions or want to add any comments about any of this, please feel free.  I love the feedback and would like to know more about the prevalence of these conditions among Fibromyalgia patients.

Monday, August 31, 2009

The Fog (Short Story)

I was inspired to create something, so I wrote this short story.  I hope you enjoy it.   The Fog

Nauseating Pain

I'm not really in the mood to deal with life's challenges today. My flare is continuing and today, my pain is nauseating me. On top of that, I've been having dizzy spells. This is all very distracting and I feel pretty foggy. It's difficult to concentrate on getting any work done... which is why I'm posting this blog right now.

Days like this make me wonder how I can go on. I can't possibly do a good job at work when I have such health problems, can I? I guess I need to take my own advice and do
"just one thing" by getting through this day and not worrying about the rest of my life all at once.

I've taken a Tramadol and I've got "Bunny" warming my back up. I also have a massage scheduled for this evening, so I can also look forward to that. I know I'll feel a little bit better, at least for an hour.

Tuesday, August 18, 2009

That's a WRAP

I have finally typed up and updated my own, personal, Wellness Recovery Action Plan (WRAP)!

The idea of the WRAP is from chapter 16 of the book: Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin Starlanyl & Mary Ellen Copeland


The WRAP is a customized group of lists for us fibromites. Since we frequently get fibrofogged and have a lot of various symptoms and treatments to keep track of, It helps to write things down. Having all of this information organized into useful groupings and keeping them together in a single document is also helpful for our caretakers, should they ever need to consult this kind of personalized fibromyalgia manual.

I made some changes from the book's instructions to the section names, because I wanted their relationships to each other to be more obvious and congruent. I also added some graphics to make it snazzier. However, I started this project by scribbling down thoughts in each category on blank paper in a big binder, then kept consulting and tweaking it as I thought of more. That's also why I added in a last updated date for myself. I anticipate that I will think of and add things to the document at a later date. Every time I print it, I'll have the "last updated" date tell me when I did.

You'll also notice that I don't have anything under the "Crisis" section yet. I am not sure what I might be like in an absolute fibro-crisis, or what plan of action I should take, as I have not yet had what I believe would be considered a crisis. However, as time goes on, I might be able to notice certain behaviors or needs when I really feel super-shitty. For now, I'm just happy that I didn't have any experience with that section just yet.

Special thanks go to Glenda Bibbero of WeAreFibro.org for reminding me about this chapter in the above-mentioned book, which I glossed over the first time I read through the book, early in my new life with Fibromyalgia. She asked me about it and wrote one up herself, publishing it in her profile journal for other members to see. She inspired me to write up my own WRAP for myself and share it with my readers, too. I also mentioned the WRAP to My doctor, who encouraged me to share it with you all here, in my blog.

Fibrofriends, I found this exercise to be very valuable to me, both during and after composing all the sections. I suggest you jot down the headings and keep your notes handy wherever you can sit and write for a few minutes. In time, you'll have your own WRAP all wrapped up and ready for your next fibrofog moment.

To read my WRAP, click:
Zouras - WRAP

Thursday, August 13, 2009

Behind and Overwhelmed

I have been bad about keeping up with my blogging and journaling and overall fibro stuff lately. I was so gung-ho when I started all these projects and did fine during my time off work, but now that I'm working, I feel like there's no time left!

I went to see my fibro doctor a couple days ago. He made some changes to my dosage and added a new supplement to my regimen: magnesium w/ malic acid. I just ordered some from drugstore.com and will be taking it twice a day for pain. I hope it helps.

My sleep has been kind crappy lately. I've been waking up a lot, but not for hours (thank goodness) - just seconds. My dreams are stressful and painful, too. The other night, I dreamt I was grazed by several bullets and my wounds were becoming severely infected. I remember feeling intense pains in my face, hand, and other areas. I don't remember getting shot at or who or why it was done, just that I was hurting and needed medical attention or something! The damned dream went on an on, as usual, and there were many chapters and scenes. Why is my brain so busy at night?

Last night I woke up a few times with a terrible migraine. When it was time to wake up for work, I still had it, but it wasn't as awful as earlier (thank goodness). It's a sign that I'm flaring. Yesterday I felt hot and cold at the same time, and I had more pains everywhere. Today I have back pain, head pain, neck pain, limb pain and I really, really did not feel like going to work today. I set my alarm for another hour and tried to give it a good nap to see if it would help. It's better than nothing, but it wasn't much.

Anyway, I told my doctor about the WRAP - Wellness Recovery Action Plan - from Ch. 16 of the FMS/CMP Survival Manual book. He encouraged me to put it online for others to see. Right now I have it scribbled down on paper for myself. I consulted it today after recognizing signs of a flare that I need to address. It's helpful. I will type it up on my blog soon and share it with the world.

I'm also 20 pounds heavier now than earlier this year (February?). My skinny clothes don't fit me and my fat clothes aren't loose. :( I'm counting calories and trying to restrict myself to 1600 calories per day. I'm also trying to get my activity levels back up again, but it's a slow and frustrating process. You can't make up for lost time - like I tried to do yesterday. I probably made my symptoms worse today.

For now I'm just ick.

Thursday, July 23, 2009

How I Spent My Sabbatical

As you may be aware, I have been given a very gracious gift by my employer: a three-week sabbatical. After seven years of continuous employment, employees of my company are given three weeks of time off that must be taken all at once. These three weeks are in addition to the usual time off allowed for the year.

I chose to take my sabbatical during July, to maximize my freedom with outdoor time. Sadly, my time off is almost up and I will return to work again on Monday. As I wax nostalgic about the past three weeks, here is a list of some of the positive things I did during that time.
  1. I went through Chapter 16 of my FMS/CMP survival manual book and created my WRAP (Wellness Recovery Action Plan).
  2. I had my refrigerator repaired.
  3. I slept late whenever possible.
  4. I spent a lot of time in my native yard, observing all kinds of wonderful wildlife, like butterflies, hummingbirds, and woodpeckers.
  5. I stretched and took walks around the neighborhood almost every day. I frequently stretched outside in the yard, getting my sunshine and enjoying the wildlife at the same time.
  6. I walked to the library and checked out a couple of books.
  7. I enjoyed homemade salads and fresh summer fruits. I frequently enjoyed them outside, while watching nature.
  8. I wrote in my journal.
  9. I ordered some gifts for myself and others, including stationery made from elephant poop (really), and a mbira (thumb piano). I spent plenty of time playing with the mbira (I learned 10 simple songs already) and my old harmonica, too.
  10. I took a brief ride on my bike. (The brakes need to be adjusted.)
  11. I created things online for my Zazzle store.
  12. I took a few epsom salt baths.
  13. I watched The Red Balloon.
  14. I visited a local pub for lunch and a drink, then bought myself an ice cream cone.
  15. I joined a new meetup group and met some interesting folks.
  16. I did two pub crawls in different towns with my husband.
  17. I got a massage.
  18. I listened to classical music while reading in my recliner, while sipping coffee, tea, or water.
  19. I baked banana bread from scratch.
I am sad that my "summer vacation" is almost over, but I'm very grateful that I had the chance to take it easy and forget about work for a while, all while enjoying great summer weather and the peak of growing season.

Tuesday, July 14, 2009

"Do you want to BE your disease?"

My husband asked me this question recently. It's because I'm so forthcoming about my condition with everyone, even people I just met - or never met yet (online pals). It's a question that made me stop and think. Am I doing the right thing? Is this information going to alienate my new friends, or cause them to judge me in a negative manner?

I just like to share everything, so people don't guess or wonder about me. I realized that I am secretly hoping to preemptively give people the information that would explain any strangeness about me that I expect them to encounter, eventually. With an invisible disease like Fibromyalgia, I don't want people to think I'm fine because I don't look or act "sick" during their initial interactions with me - I may not be up to the next outing or whatever, and want to be upfront about that. I'm the kind of person who doesn't like those phony "let's get together sometime" un-vitations. We all know someone who confirms attendance at an event or party and then doesn't show. I HATE that. I am the kind of person who means what she says, and I don't want any false expectations. I figure that it's only fair to others if I let them know what's going on with me right away.

My husband's got his own invisible disease - Crohn's - so
I can certainly value his perspective on this. Perhaps he doesn't like to disclose his health problems to everyone he meets because of the embarrassing nature of the worst symptoms. Although I don't mind discussing my IBS at the dinner table, I can certainly understand not wanting to tell every stranger you meet that you sometimes have to make absolutely sure that a toilet is nearby. That's not a "nice" first impression. (And yes, I also notice that others aren't so happy to discuss my IBS, either - dinner table or not. Wimps! Heh.)

His symptoms also wax and wane, like mine do, so he also appears to "not look sick" to others when he's able to be social. However he's had his diagnosis for a lot longer than I've had mine, so he knows his triggers and cycles better than I know mine. (Color me jealous.)

I think there may also be a gender component to the differing ways we view this topic. As a male, I believe he doesn't like to introduce himself to the world as a sickly person, with vulnerabilities. It's just not masculine. As a female, I don't worry too much about appearing sickly, I guess, because I don't really believe that I need to appear so strong. I do have some self-respect, don't get me wrong, but I know that society doesn't expect me to be Hercules because I'm a chick. That means that I don't really see the big deal in letting everyone know that, well, I'm not Hercules - not by a long shot. Guys - yeah, I guess they might not care to remove the doubt so early on. I can understand that.

So, do I want to BE my disease? No, of course not. I don't want to celebrate it or love it. But I do like to be clear with people. I may seem okay today, but I'm in pain all the time, even when I'm smiling. It takes a lot of effort to make lemonade out of these lemons, but I'm doing it, for my own sake. I want people to know I'm making an effort to choose to interact with them. I am tired. I'm uncomfortable. And I'm in pain. Perhaps I could be napping right now, or resting up, or making progress on some important project or chores, but I'm writing this post today because I care about you, my dear readers.

I have Fibromyalgia. I'm also a person with varied interests. I'm hoping you will not judge me too harshly for telling you the truth about me, whether it's nice or not. I just know I'm not going to hide it like some skeleton in my closet. It's not my fault that I have this challenge - it just is. This is part of who I am.

Thursday, July 9, 2009

Some Quiet Time


Here again I lie in bed
While countless thoughts race through my head.
Dare I look to check the time?
Of course I do - 1:39.

Spouse and I retired by ten,
As always, I took my Ambien,
Yet he's the one who's sound asleep,
While I avoid making a peep.

I notice silence; no birds are singing,
Though, of course, my ears are ringing.
I'm also hungry at this odd hour.
Should I have a snack, or rely on will power?

Maybe if I close my eyes
Husband's snores will hypnotize.
I try it for a little bit,
But my thoughts return to... a biscuit.

No! I must not give up hope!
It's just some quiet time. I'll cope.
I turn over, snuggle in,
Take a breath, and even grin.

Yes, I will be dreaming soon,
Not thinking thoughts about the moon,
Or wondering how my level of pain
Will soar tomorrow, thanks to my brain.

Not reprioritizing stuff
Because I won't be up to snuff.
No, I won't worry 'bout tomorrow,
Whether there'll be "spoons" to borrow.

I'll just return to dreaming bliss,
Perhaps I won't remember this.
I check the clock. Two hours have passed.
I can't believe it. That went fast!

But this is how it always goes.
Fibromyalgia's insomnia blows.
Perhaps, someday, they'll find a cure.
For now, I guess I must endure...