Wednesday, December 29, 2010

The "Baby Steps" Workout

I just did 6 wall push-ups and 6 sit-ups.  This is week 6 of my "Baby Steps" workout regimen.  Each week, I add one more incremental wall push-up and sit-up to my daily quota.  This way, I don't overdo it, my body can handle the very gradual change, and I get to enjoy the (eventual) benefits of doing mild, muscle-building exercise on a daily basis.

Back in "the before time" (before I had Fibromyalgia) I started this workout regimen for myself to build up my strength and stamina, little by little.  I did regular, floor push-ups instead of wall push-ups back then, too.  I got as far as 22 per day in 22 weeks and was so proud of myself for being able to do 22 push-ups at once!  Then I got an awful flu bug that made me violently ill and made me lose 10 pounds of water in one week.  It was not fun, to say the least.  Needless to say, I was unable to continue my workout routine during my week of constant fluid expulsions from various orifices.  My gradual return to health after that week also was not inspiring me to get back on the wagon so I had essentially quit and forgot about it all while recovering... until now.
I've been especially ill for the past 5 months now with what today appears to be gastritis and biliary dyskinesia, along with daily headaches on top of the bellyaches, bloating, cramps, and general discomfort.  I have spent many days home from work, vegetating in bed or on my easy chair ("the nest" as Don likes to call it), trying to gain some comfort or distract myself from my symptoms with journaling, reading books, watching television, or playing computer games or blog reading.  I have also been very unhappy with my recent thirty-pound weight gain and all the problems associated with that.  While lamenting that I was stuck between a rock and a hard place about being unable to lose weight or exercise for my own good, it finally came to me that I had already invented a great way for a Fibromite like myself to sneak in something good without upsetting my body too much and causing a flare-up.  I'm a genius!

So, with some minor adjustments from my original version, I am back on the slow, rickety, but reliable (little red) wagon (being pulled by a baby goat) of gaining back lost muscle mass, losing some weight by burning calories and increasing my metabolism, feeling a daily sense of accomplishment and progress, and looking forward to less frequent flares, better tolerance for activity, and reducing stress.  Although it will be a slow journey to reach these goals, I am determined to remember the lesson I learned the first time around and make sure I stick to the program no matter how I'm feeling.  It's a relatively small amount of time and effort, especially in the first week, so I know I'd feel much worse if I were to skip.  (How lame would I be to determine I can't do one single wall push-up and one single sit-up today, right?)  

So, I'm very proud to report that I've accomplished 5 full weeks of daily baby steps workouts, in addition to any other exercises I might happen to squeeze into my day while I'm feeling up to it, like walks and climbing stairs and doing chores.  I'm not going to fall off THIS wagon, damn it!  That would be so, so lame of me.  I will continue and just enjoy the slow, scenic route to feeling better.

Monday, December 13, 2010

Look at Me; I'm SUPER*

* SUPER to a Fibromyalgia patient is not unlike a regular-sized person being called a "giant midget" in some ways, but it is a temporary and fleeting phenomenon and is an event to be celebrated as a major victory.

Today I woke up, earlier than I usually like to, and I was actually ready to get up and start the day. That's rare for me, as I am usually really ready to sleep lapse into a coma when morning comes.  This was my first clue that something was different.  Besides, it's Monday.

So I got up, all bright-eyed and bushy-tailed, and announced to Don my sudden realization: "I don't feel terrible today!"  I wasn't feeling cured, by any means, just not as awful as the past few weeks or even months.  Hooray!

I'm taking a daily antacid prescription first thing in the morning these days, to see if it helps my gastritis and abdominal pain problems I've been having since August.  I am supposed to wait 30 minutes before eating breakfast after popping this pill, so I busied myself while waiting.  

First, I got my new "baby steps" workout regimen out of the way for today.  I'm on week 4, which means that I need to do 4 wall push-ups and 4 sit-ups every day this week.  I'm adding one increment each week, and hope to build back some lost and much-missed muscle.  Doing those took only a couple minutes of my time, so I went to the basement and hopped onto my elliptical machine for a bonus 4-minute (slow) cardio workout.  It was not too bad and I'm feeling very proud of myself for having done it, since I don't usually get enough exercise.  Yay me!

While downstairs, I noticed some laundry in the dryer, so I unloaded into the basket and - get this - I carried the clean laundry upstairs into the bedroom for folding.  I know, it's unheard of.  I haven't been able to deliver a load of laundry up or down the stairs in months!  I brought up the basket and told Don "Look at me; I'm SUPER!" with a bit of a dumb grin on my face.  He immediately warned me, "Don't over-do it."  He's right, I need to remember to curtail my enthusiasm and pace while I'm feeling well, so I don't feel like crap tonight or tomorrow.  Thanks, Don.

After folding up the laundry, I am ready for breakfast and munching away on my cereal as I type this post.  I'm hoping my day continues to be at least a good day, if not great.  Hope you're having a great one!

Thursday, December 2, 2010

The Vicious Circle of Rare Disease Diagnosis

Warning: I need to rant a bit here.

When you have been diagnosed with a multitude of health conditions that includes Fibromyalgia Syndrome, as I have, you may find the need to dig deeper and see if there is a more reasonable diagnosis lurking behind the myriad symptoms - something that ties at least some of the symptoms together and makes more sense.

After being diagnosed with Fibro in February of 2008, I thought I would find some relief, thinking "okay, we know what this is, now we can treat it." Today, almost three years later, I'm not feeling much relief. Although having some diagnosis for all the things that seem to be malfunctioning in my body was at first comforting, I have realized some things.

Fibromyalgia is merely the name of a syndrome, which means it is merely a short way of naming a collection of symptoms that occur together. It isn't actually classified as a disease or condition. Saying one has Fibromyalgia is just a way of saying that a certain (long) list of non-fatal symptoms is occurring in the person's body. Having a doctor declare to me that I am experiencing a collection of symptoms is really not very helpful, really. Tell me something I didn't already know! There is no way to treat the core problem because the core problem is simply not yet known. Treatments currently focus on relieving whichever symptoms cause the most distress to the patient, and many are ineffective or only mildly helpful at best.

Many doctors tend to shy away from things they don't understand. The medical journals and conferences tell them what the official word is on how to diagnose and treat patients, and they tend to follow protocol. That's good much of the time, but sometimes this pattern is not very helpful to the patient. If it looks like a duck and sounds like a duck, it's probably not a horse, right? But when patients have symptoms that greatly affect the quality of their lives, they want a little more than standard protocol from their doctors. Why are we dealing with so many systemic problems? Why does the list of symptoms continue to grow despite our best efforts at improving them? Why does coping reasonably with these symptoms while still searching for real answers seem to spell "hypochondriac" to doctors who hear our best guesses for investigating conditions with similar symptoms and decide we aren't sick enough to pursue those tests?

Here's the thing. Once upon a time, all the health conditions that are known today were unidentified. Over the centuries, humans have observed and recorded health problems and treatments. When patterns emerged, conditions were named. As the collection of health conditions amassed, new, albeit rare, conditions began to be named and documented. You know the saying "there's a first time for everything" right? It's true for named health conditions, too. Every condition we know about today was once new... and rare.

We have always had a collection of rare health conditions. Only a very few of the patients seen have been diagnosed with these rare conditions. Some of them have become less rare as more was learned and diagnosing methods were narrowed down. Today, we still have a great many "rare" diseases and conditions out there. Statistically, very few people have been diagnosed with these conditions - but there are some out there.

So, when I ask a doctor to consider the possibility that I may have a certain health conditions and the reply is "no, it's not that; that's very rare," I propose that that reason for coming to a dead end on figuring me out is bullshit. Doctors: If you fail to test people for conditions, you will have contributed to the "rarity" of those conditions by reducing the statistics - the very reason you have provided to me for failing to pursue investigation of the possibility that such a condition could make sense of my problems.

Another reason I have been given was that if I had such a condition, I'd be much sicker than I am. Again, logic fails. Whatever happened to the great advice of getting diagnosed early for conditions, so it can be treated and possibly cured before it progresses to a point where nothing helps? If I'm "not sick enough" to be considered for a condition, does that mean that doctors don't want to diagnose early? Will they consider the condition if I wait until I suffer much more? Is this humane??

There are some diagnostic tests that cost a lot to do or require much more reasoning and thought and time to put together, and I suspect that these are the real obstacles I'm fighting. If this is the case, I'm thoroughly disgusted. I am trying to live my life as best as I can while dealing with at least a dozen symptoms at any given time. Meanwhile, I'm working to improve my quality of life and reduce the burdens on others by searching for meaningful reasons for my body's failings. I'm motivated to do the research, though my medical knowledge is greatly limited. I need the help of medical experts to find these answers, yet the true rarity in medicine today is a doctor who is actually willing to empathize and help me find those answers.

My plea to doctors is this. Don't dismiss my hypotheses with the rarity excuse and don't use cost or effort as a reason either. My body is breaking down and I need a better diagnosis than a syndrome. Cost and effort of investigation should not play a part in my health. I need more effective treatments and I want to know if defects in my DNA or blood or other body parts could be the missing link in what I'm experiencing. If you don't want to help me improve my health, I don't need you at all. If you don't know the answers, call on a colleague who might. Don't discard me. I'm a human being. I want to live well and I want others like me to live well. If you were the one in my place, would you approach things differently? Think about it.

Wednesday, December 1, 2010

Bellyaching and Stuff

On November 12th, I had an EGD performed.  Gastritis was detected, but no ulcers or other abnormalities, and a biopsy test revealed no H. Pylori is present.  In the absence of any other clues, including no gallstones and no gallbladder inflammation or infection, the GI performing the EGD warned me to ease off the NSAIDs (like Aleve, which I use only for more severe headaches/migraines and very rarely as an alternative pain reliever for hip pain or joint pains that may have inflammation) and consider gallbladder removal if my pain episodes continue.  He didn't seem very tolerant of my many questions, despite the fact that my case is not clear-cut for gallbladder removal.  So I sought out another GI for a second opinion.

Last Monday I brought all my test results and questions to the new GI and he was much more helpful to me.  He listened to all of my symptoms and concerns and agreed with my opinion that gallbladder surgery seemed not to be the clear answer to my problems.  Not only that, he actually commended me for being "proactive" about my own health and bringing all my documentation with me.  This is how doctors should be!  (Special thanks to my niece for recommending him to me.)

Anyway, his best guess for a diagnosis right now is functional dyspepsia, which he explained can be quite common for people who also have IBS or/and Fibromyalgia.  It is not the same as IBS, which I have dealt with before, but much like IBS, it is a condition that turns out can be difficult to live with, but is not likely to cause permanent damage.  He is having me try some acid reducing medication (Dexilant), since my pain seems to be more on the stomach side rather than one the gallbladder side of my upper abdomen.  

I was also given a pamphlet called "Gas and Flatulence Prevention Diet" which discusses foods that can cause gas in some people, and the science of bloating, which can get ridiculously severe during my pain episodes.  There is a breakdown of various foods by groups that can be problematic, but each person is different so finding out if any of them make my problems worse is going to take some trial and error.  The doctor suggested I try to eliminate one food or food group at a time and see if there is any change either with elimination or returning it to my diet.  He made sure I understood that he was NOT suggesting avoiding all the problem foods at once, or else I'd have pretty much nothing left to eat.  Looking at the list, I see why.  It seems the only food group that isn't listed as a potential troublemaker is lean meat.  I'm documenting my diet and symptoms, so I can look for new patterns I may have missed.

Lastly, he suggested that I try to eat smaller, more frequent meals, avoiding large meals.  The reasoning behind this suggestion is that some people, especially sensitive folks like us fibromites, don't tolerate the sensation of the stretching of the stomach well, and it can feel painful.  To minimize on the stretching, I could try grazing little by little throughout the day.   It's hard to have half a meal here and there, especially if you want something hot, but I understand the logic and am glad he gave me so many options and ideas with explanations.

He left me with one last bit of advice before my next appointment: find a way to cope with stress and my annoying symptoms so I don't slip into a constant state of worrying about the next flare up.  I believe he was talking specifically about the abdominal pain, but I know this is also important to keep in mind for the rest of my Fibromyalgia symptoms and life in general.  I do what I can with journaling, blogging, and reaching out to others in need, knowing I won't always have it all under control.  There are days when the symptoms just pile on and I get downright cranky or fed up, especially when I have to miss work and get behind on my duties at the office, but the reality is that I'm stuck with much of this bad luck and need to buck up and do what I can to find my own happiness wherever possible.  I'll definitely keep working at this.

Thursday, November 11, 2010

HIDA (Hepatobiliary) Scan Results - Not Good

As you may recall from this post, I've been dealing with some mysterious, intermittent abdominal pains since August 9th of this year.  At first, it was just a discomfort and I blamed a virus I'd apparently caught, since I had a sore throat for a few days after my husband got sick.  However, the pains continued and I couldn't make heads or tails of the cause or triggers.  

On Friday, August 20th, I was at work when a particularly painful episode snuck up on me that afternoon.  I headed to the Emergency Room.  The tests came back mostly normal, but the abdominal ultrasound revealed "possible sludge" in my gallbladder, which my internist doubted could have anything to do with my particular kind of pains.  The gastroenterologist I saw on his recommendation had me try skipping my probiotics for a while.  When that didn't work, he ordered a HIDA scan to check my gallbladder and liver functioning, as well as an EGD to check things out, since my blood and urine tests revealed nothing.  

Meanwhile, per Don's suggestion, I had stopped drinking the water and coffee provided in my office by my work.  Our building was built in 1976 and I noticed a long time ago that on Monday mornings, the water from the kitchen sink really stinks, even after washing and drying my hands.  Our drinking water is UV filtered, and doesn't stink, but I've learned that UV doesn't remove all contaminants from water.  I also noticed that I wasn't having episodes on the weekends or on days when I'm not at work, which we both thought was a strong case to avoid SOMEthing at work.

So, as of Wednesday, October 27th, I believe, I have been avoiding the work water (I bring my own supply in a thermos), and for the most part, I've been without my afternoonly abdominal pain episodes (that start around 2:30pm or so).  I started looking into possible contaminants that may be affecting me, though apparently not all of us in the office are doing as poorly as I am.  I'm open to the possibility that my body has some defect that makes me especially susceptible to problems.  At any rate, I brought this list of possible drinking water contaminants and their health effects to my fibro doctor and told him about the absence of abdominal pain episodes while not drinking work water.  His immediate suspicion was excess copper from old plumbing in the building, possibly causing problems in my body.  He urged me to discuss the problem with my work and get the water tested.  

(He also suspects formaldehyde in the air (from old insulation) or some other air contaminant that could be contributing to my daily voice degradations that also happens only on days I go to the office.  But that's another story for another day.)

I brought my concerns to my human resources manager and urged the company to take some action to find out if the water is safe - not just for myself, but for the entire office.  She agreed to look into it.

In the meantime, last Tuesday night, around 5pm or so, I was in the office, both shivering and sweating at the same time, wondering if I'd caught the flu or was having a fever for some reason.  I went home to rest and still felt awful in the morning, so yesterday I stayed home, still unsure what's going on.  I even had to run to the bathroom for fear of vomiting, but it wouldn't happen.  Then, oddly, for the first time after a couple weeks now of not drinking work water, my abdomen was in severe pain.  I couldn't even straighten up to walk.  I was also starving, so I fixed myself a healthy lunch salad and tried to rest a bit.

Well, yesterday was also the day I got a call from the gastroenterologist's office regarding the test results from my HIDA scan.  I expected to hear that all was normal, especially since a nurse was calling to report the results (and not my doctor), but she said my gallbladder isn't functioning  very well at all.  My ejection fraction was measured to be 16%, which is less than half of a healthy gallbladder - 36%.  She also said that I should have my gallbladder removed because of this.  I gasped.  I was so shocked to hear all this.  She couldn't tell me why my gallbladder contractions are not effective.  I had to have another ultrasound just before the HIDA scan to ensure I didn't have gallstones, so I assume I still don't.  However, nobody reported about that test.  I asked for a copy of the test results to be mailed to me so I can see all the details.

While I wait, however, I did a search on copper and gallbladder and found that excess copper in one's system can cause a gallbladder to become ineffective.  Not only that, too much copper in one's system can cause all sorts of damage, including liver problems and neurological symptoms.  Wilson's Disease also came up a lot in my research.  It's a hereditary disease that causes the patient to be unable to rid the body of excess copper, and if left untreated, can be fatal. 

I decided I need to understand what's really going on here.  Is my gallbladder just faulty for some reason, or is something causing it to fail?  Is that something too much copper?  Is this copper coming from drinking water?  Can I treat this, or do I really need to remove my gallbladder?  Will removing my gallbladder solve my problems, or only remove one of the symptoms of my bigger problems?  What the problem stems from brain damage from my concussion?  Is there any way to find out if that's the case?  Can anything be done about that, if that's the case?  Will anything else go wrong if that's the case?  Is any of this related to my other symptoms, like the new Erythema Nodosum on my legs?

I sure hope medical students are required to take some detective classes in med school, because I  require some deduction and thinking to be done.  I'm not willing to go under the knife so easily.  I've read that up to 40% of patients who have had their gallbladder removed continue to experience abdominal pain and nausea.

I would love to have an easy, cut-and-dry diagnosis that makes sense and for which removal of my gallbladder would solve my problems, but I'm not convinced of this yet.  Stay tuned as I learn more about this all.  If you have any experience with any of this, please feel free to share.

Thursday, November 4, 2010

Making Molehills out of Mountains

I've been dealing with many symptoms lately - some old, some new - and have been a bit run down.  I'm noticing little tasks and chores are piling up on me while I postpone them to rest or try to get comfortable for a while.  I have notes about various things I jotted down while away from the place where I need to do them, reminders about stuff I need to do when not in the middle of doing something else, etc.   The result is a mountain of undone stuff that stares at me every time I sit down at my desk full of papers.

This is about the time I remembered to jot down one more note for myself: "Do just one thing."  Rather than bemoaning the fact that I am so behind on my pile of chores, I am going to rejuvenate myself by picking one task and getting it done and off the heap.  If getting that one thing done creates a productive inertia and I am up to doing more, even better.  But the pressure is off for the session after the first task is done.  

Last night, after I put up the note to remind me to take my own, good advice, I filed a few documents that have piled up in my inbox at home.  It only took me about five minutes to do, but it felt great to finally get that task done.  Once that was done, I checked one of my to-do lists for something quick I could squeeze in before dinner and got that done, too.  Whoohoo!  How could I have forgotten one of my best ideas so easily?  Let's just blame Fibro Fog for that. ;)

When you're in pain, procrastinating a task or two is okay - to a point, but if it becomes a habit, your self-esteem can feed into a vicious cycle of feeling depressed and having more pain.  Conquer that depression by doing one, easy thing that's been nagging at you for a few days (or weeks).  You'll be surprised at how much better you will feel by having even one thing finally be done and off the list.

Wednesday, October 27, 2010

How are you today?

I'm just a little left of normal for my "typical fibro" self today. I'm waiting to see if my daily abdominal pains will come on this afternoon. It's just about that time, but I'm changing factors to see if any of them help. Wish me luck!!

Tuesday, October 26, 2010

Fright Morning

I just survived a harrowing ordeal.  It has nothing to do with Halloween or the various seasonal pranks or visions of ghosts or demons or anything like that.  I just experienced an awful episode of sleep paralysis.

The Real World:
Here's what happened.  I got up just before 6am today to go to the bathroom.  This is not unusual for me, but getting up does frequently interrupt some of the best possible sleep I get, which occurs in the morning hours.  This is why I tend to get up for work around 8am and usually still feel a bit like a zombie for several hours while my stiff muscles thaw out a bit.  

Anyway, after the pee break, I got back into bed and tried to get comfortable.  It has been raining all night, but softly.  The wind, however, was still howling wildly outside in frequent gusts.  Today is also garbage day in my neighborhood, so the trucks' brakes can be heard in the distance.  

I woke Don up with my pee break, so he decided to start his day.  After a half-hour or so, I finally fell into a very light sleep, waking up periodically with Don's moving around the house and showering and such.  At 7:30, Don gave me a kiss good-bye and went off to work.

My World:
Sometime after the kiss, I fell asleep again, knowing that I only had a few minutes before having to get up for work myself.  I dreamt some usual nonsense, then "awoke" to realize I was in bed, looking at the door, the ceiling, my own outstretched arm.  

I tried to move but noticed that I was not only numb, but tingling.  My ears picked up sounds that I knew couldn't be Don's voice, but somehow sounded a bit like it - like he was talking to someone on the phone, from another room.  I tried to call out to him to help me and heard myself struggle to get sounds out.  I recognized this as sleep paralysis, but felt unable to shake free of it.  I fought and fought to move my arm, only to see it lying there in its original position, despite my firm belief that I had managed to move it just a bit.  My ears screamed with tinnitus and I felt the cold numbness and tingling in my entire body.  I looked around the room, seeing changing spots on the walls, shapes that weren't what they should be, and knew these were signs that I was not fully conscious.  Nonetheless, I fought and fought to move and scream.  

The strong winds worried me, as I thought our patio furniture might break a window.   I worried that I would not wake up in time to go to work or at least notify someone that I'd be late.  I worried that I might choke myself on a heating pad cord that was not even in the bed, but that I "saw" and "grabbed" with my hand.  I tried using the smell of a hallucinated lotion bottle to wake me up.  I tried waiting patiently for the paralysis to end while my ears and eyes experienced things I knew to be false.  I kept drifting off and coming back into what I thought was consciousness, only to realize each time that I was still trapped in my own corpse-like body .  

My patience wore out after a few times and I struggled again, determined to break through the paralysis and get myself out of bed, to no avail.  This went on for what seemed like ages, but could not have been more than an hour, as my release finally arrived at 8:20am.  There was no mistaking this for paralysis.  The tinnitus was gone, the tingling, cold numbness was gone, and the room looked a lot less surprising.  It was almost like the end of a violent storm.  I was finally awake.  What a relief!  If there was a way to kiss the ground of consciousness, I am going to be doing that soon.

Have you dealt with episodes like this?  What do you think is the cause of it?  I was sleeping on my back at the time.  The amount and quality of my sleep varies from night to night, and I have plenty of stress with all the pains, fatigue, responsibilities at work and home, weight gain struggles, and new, yet-undiagnosed symptoms for which I will soon have more "fun" tests to go through.  I've had a concussion, too.  I'm also on plenty of prescriptions to try to treat my many symptoms of Fibromyalgia.  

Some or all of these could be contributing to this.  Or it could just be a fluke thing.  Whatever it is, I'm not looking forward to the next one.

Monday, October 11, 2010

Erythema Nodosum

What's Erythema Nodosum (EN), you ask?  It's basically slightly reddish, very tender nodules, occurring just under the skin, usually occurring on the lower legs.  I've got them.  This is new to me, and is occurring at a time overlapping some other new and troubling symptoms, specifically, intermittent mild to severe abdominal pain with nausea and fatigue.  I've spent many couchant days with Wellington, just hurting and trying to feel better.  I've had several days when sudden onset of pain and/or nausea hit me just before or at work.  

The most recent episode occurred in the office last Wednesday around 1:45pm.  My belly was wrenched with cramping pain, so I headed right to the rest room, hoping for relief.  I broke out in a cold, dripping sweat while a terrible nausea came over me, all the while, still doubled over in pain.  I had a meeting scheduled with my boss for 2pm, but ended up having to reschedule it, due to my unavailability.  I had to text him about my emergency.  I was stuck in that stall for about an hour before I felt stable enough to get my purse to leave work and drive home.  My pain continued for several hours until it slowly began to dissipate to a milder version that would continue for about two more days.  The heating pad on my belly helped with the discomfort as I watched episodes of Dr. G: Medical Examiner and Mystery Diagnosis, my newest favorite sick day shows.

There are several causes indicated for the occurrence of EN, including various infections and Inflammatory Bowel Diseases like Ulcerative Colitis or Crohn's Disease.  The last visit to the doctor for the abdominal pain was on Aug. 27th with a new gastroenterologist, who suggested I try stopping the daily probiotics, in case my guts have too many bacteria in them.  I have been off the probiotics since late August now, yet I still continue to have the episodes.  All blood and urine tests done thus far have been "normal" so I'm not sure what is behind all this.  I just know the abdominal pains and EN are linked.  It's too coincidental for these to occur for independent reasons, right?

I have had a few days of a mild sore throat in mid-August, before all of this started, but I find it hard to believe that I could have had strep, a common cause of EN.  Strep also doesn't explain the abdominal stuff going on.  

At any rate, my research on this is definitely continuing until I can at least determine my next plan of action.  With the way my last few doctor visits went, I feel like I need to present them with plausible ideas.  The lack of thoroughness is very disheartening to me.  My dermatologist was actually the one who diagnosed the EN, with just a quick glance and touch.  He prescribed a topical steroid that I've been applying religiously since my diagnosis on Sep. 24th.  He also gave me no reason to dig deeper for an underlying cause, which makes me a bit sad.  Thus far, all the info I've dug up on EN has been on my own.  He didn't even write the name down - I had to find it based on something that sounded like what he said, which I remembered as "ereth-- something".  

On the bright side, last Saturday and Sunday were a breath of fresh air.  I felt lots better than I had been lately, even as recently as Friday.  I got outside, did some walking, and enjoyed some quality time with Don.  I don't want to speak too soon, but today is going pretty well so far, too.  However, both Don and I noticed that I've been having sick time on Wednesdays lately.  We are wondering if there is something in the air or water in my work building (the water is not great, but we have a filter for drinking water which I use), or if there is some other thing in my routine, perhaps, that is contributing to my deterioration after a couple of days of the work week.  

Over the next few weeks, I'm going to see if I can find out what helps.  The first thing I'm trying is not taking my morning vitamins and supplements, since I noticed that I forgot to take them both Saturday and Sunday.  I skipped them purposely this morning, to see if I can make it to Wednesday a little more easily this week.  If that doesn't work, perhaps I'll try avoiding drinking the building's water and bring in my own.  If that doesn't help, maybe I can try to get more sleep, like I definitely did last weekend.  

I'm thinking something in my genetic makeup or somewhere in my body is at odds with something I'm exposing to it.  Maybe I can narrow it down and avoid it.  Wish me luck!

Monday, September 27, 2010

What Am I Smiling About?

The other day, Don and I went out with some friends to enjoy some of our favorite beers together.  During the conversation, I started noticing my back was making sitting uncomfortable.  At first, I ignored it and tried to make the most of the socializing fun.  Eventually, I gave out and slouched, noticeably.  Apparently, I maintained a big smile on my face while I slouched in pain, oddly.  I wasn't aware until one of my friends looked at me and curiously asked me what I was smiling about.  I don't know!  I guess I was trying to remain pleasant, despite my personal struggles.  Perhaps the slouch itself made me smile because it was a silly position to take, in public.  Whatever it was, it made me realize that I must do a great job of disguising my pain in front of others.  

When asked about my smile, I confessed that my back was hurting me and I didn't know how to relieve it, I got a bit of a pitiful, synchronized groan from the group.  I don't want people to pity me.  This became apparent to me while I was using a cane to get around at work for a few days.  The cane elicits such a pity response from everyone who knows you!  I found it ironic that the cane really only indicated foot/leg pain or balance issues, while the other pains and problems of Fibromyalgia and my myriad other health problems continue - cane or no cane.  When the cane stopped accompanying me to work, these same folks would delight in my improvement, assuming I was feeling perfect because there was no cane.  This assumption is so wrong it disgusted me.  I blurted out my feelings to some of my coworkers who felt compelled to celebrate my caneless walking.  I also recall telling people not to pity me when they saw me with the cane and instantly frowned and gave me that look. 

So, as I slouched, smiling like an idiot, it occurred to me that I am enabling this whole perception problem to continue.  I'm part of the problem.  People are confused about how I feel and what I'm experiencing because I'm not being true about it.  I'm trying to fool them.  But why?  I never though of myself as a dishonest person.  In fact, I suck at lying and always try to be honest with people, even when it's uncomfortable.  You can't help someone understand you if you lie to them.  So what's with my phony public persona?

Like many folks, I have learned that talking about pains and problems that others don't have is usually no fun for either party.  I hate being a whiner - I want to be tough!  Everyone wants to be strong.  Nobody likes to be weak.  I don't like to ask for help.  I don't like pity.  I want to be independent and able to help others.  

Well, it's nice to want things, isn't it?  I need to face facts.  My condition is limiting, sometimes more so than others.  It is poorly understood and poorly managed.  I have ups and downs and I don't know when the direction will shift.  Sometimes I think it's about time for an up, but I drop down a little more first.  Fibro hurts.  I need to work on the realization that I am chronically ill and am not as healthy as many others out there.  There are others who are ill as well, and they will understand better my ups and downs.  I need to trust that they can handle the truth about how I'm feeling.  I need to give my friends more credit.

Being a party pooper sucks, too, though.  I hate to ruin a party with my awkwardly depressing status updates.  Everyone wants to help, though there is usually nothing they can do.  Perhaps I'm hoping I can fake it till I make it by pretending I'm not feeling quite as badly as I really am.  Sometimes, that works for me.  

At any rate, I'm learning about my ever-changing self and how to best handle the various situations that arise.  Do you have any stories or advice on how to handle the inconvenient symptoms with others around?  I'd love to hear from you.

Tuesday, September 14, 2010

Wellington Bear

This is Wellington.

He has lived in our home for many years - a bit longer than I have been around, actually.  When I was having abdominal pains not too long ago, I decided he looked cuddly and soft and I wanted to hug him, to protect my belly and act as what I call a "magic pillow".

His name has inspired me to use him as a reminder and a symbol of wellness.  There are times when I don't feel so downright awful and I need to notice and appreciate those times.  Other times, when I do feel downright awful, Wellington is there for me to soothe me for a bit and appeal to my inner child while I wait out the pain and discomfort.

I want to thank the person who selected this bear as a gift for Don, many years ago.  She didn't name it or assign it this purpose, but I'm glad he was there for me to adopt and cuddle, (especially when Don is not available for cuddling).  Thanks, Kelly.

Sunday, September 12, 2010

An Awful Charley Horse

Last Saturday morning, the day I look forward to all week for sleeping as long as I possibly can, an innocent leg stretch around 5am triggered a ridiculously monstrous leg cramp in my left calf that is continuing to wreak havoc.  

Now I've gotten Charley Horses in my calves before, and they are usually triggered by some instinctive leg stretching done in the bed, but this one was some kind of mother of all Charley Horses.  I couldn't use my usual trick to chase it away - flexing my foot to help stretch the calf muscle out of its tight lock.  This time, The pain was so intense there was really not much I could do to find any relief but suffer and wait it out.  I was crippled so badly, I had to bend my knee to bring my leg up to my hands, but I was almost terrified to touch my leg.  Plan B was to massage the muscle back into a relaxed state.  Yeah, right.  The tight rock of a muscle trapped inside made the skin on my leg not want to be touched, much less be massaged.  I did my best to try not to wince loudly enough for Don to awaken, though all the movement was already ruining that.  I said nothing and tried to settled back into an acceptable position for a bed-mate, while handling the pain as quietly as possible.  

The episode lasted less than a minute, I'm pretty sure, but it lasted entirely too long for me, agonizing as it was.  After the muscle finally gave up its death grip a bit, I tried to move my foot a bit to help stretch it.  It resisted a lot and I was really afraid of damaging it if I forced the stretch, so I was very gentle about it and tried to sleep a bit longer.  

Afterwards, I was immediately aware of that lingering feeling of the post-cramping pain.  As crazy as the episode was, I didn't think I'd be feeling anything by the time I got up.  Little did I realize that something evil was awakened that morning.  The fibro beast of muscle cramps decided to crack the whip on me and show me who's boss.  The first dozen or so steps from the bed that morning and this morning as well, both felt like I was trying to walk on a sprained leg.  I couldn't bear the weight of the step and practically hopped to the bathroom each morning.  Luckily, as I continued to walk, I was able to do so with just a limp. 

As I write today, this Sunday evening, I continue to feel the after-effects of the ugly incident.  I limp and long for the more normal feeling in my right calf.  Both legs were sensitive to the touch before this, but compared to how my left calf is feeling, I am going to call the right leg "normal" by comparison.  (For someone dealing with Myofascial Pain and Fibromyalgia, that's really saying something!)

I felt more comfortable with my cane with me when I took a walk with Don around the block, but I have been trying to stay off the leg for most of the day, with some continual stretching movements being my primary treatment.  My back is also nagging at me but I can't comprehend what it is that it could want, as nothing seems to console it lately.  I've used the heat wrap on it, which feels a little better, but doesn't relieve it.  Medications are not cutting the mustard either, lately.  I'm tempted to medicate with some delicious beer.  At least I'll be enjoying something.

As for possible causes, I've read that dehydration, lack of potassium or electrolytes may contribute to such problems, but I don't think these could be the case.  To be safe, I ingested some potassium-rich orange juice that we happened to have in the fridge and have been drinking plenty of liquids.  

I also realized that Friday, as a response to my flaring Morton's Foot symptoms in my left foot, I'd devised a simple solution that seemed to help me greatly: I wadded up some tissue and taped a bandage over it on the bottom of my left foot, in the appropriate place (knuckle leading to the big toe).  The restoration of the tripod structure of the foot relieved the pain in my second foot knuckle right away, and I was able to transfer the support from shoe to slipper in the evening, without doing anything special.
I'd learned recently in my trigger point workbook that there is a trigger point in the calf muscle that can contribute to pain in the foot.  Perhaps when I changed the balance of my foot, it may have affected my overworked calf muscle?  I don't know if any of this is even possible, but it's crossing my inquiring mind.  I did not repeat the bandage trick yesterday or today, partly because I wanted to see if I could prevent further attacks, but mostly because I couldn't imagine bending my leg over my knee to work on the foot while my calf is so sensitive.  I must find some sort of balance.

So, if things don't improve soon, I'll likely have a rough morning tomorrow and the cane will be accompanying me to work again.

UPDATE: As of Monday morning, I was still feeling the after-effects, but was able to walk on my left leg much better, even right out of bed.  I may be able to do without the cane today after all.  Hurray! 

Monday, August 30, 2010

Did You Miss Me?

I know I've been slacking on the blog posting lately.  Sorry about that.  Things have been a little weirder than usual for me, but I'll attempt to catch everyone up here, while it's on my mind.

Back on August 9th, I started getting these mild abdominal pains here and there.  I didn't think anything of them then, and especially not a couple days later, when I also developed a sore throat, which I assume came from a bug my husband Don passed on to me.  He'd been sick the week before with a bug, so I figured some virus was invading my system and wreaking havoc on my guts a bit.  By Friday, the 13th (ooh!) my sore throat was better and I returned to work, despite the ongoing abdominal pain.

Having been diagnosed with Irritable Bowel Syndrome (IBS) a few years back in late 2007 or so, I'd been doing very well since I started taking a probiotic daily with my vitamins.  I figured I'd been "spoiled" by the virtual elimination of IBS symptoms and didn't think much of a little irritation here and there, especially with the recent mysterious bug.  However, as days passed, I started noticing the abdominal pain was waxing and waning at times, and when it was worse, I seemed also to bloat up, feeling pain from the increased pressure in my belly.  I tried to notice if it had anything to do with eating or eating certain things.  Sometimes I would wake up with the pain, though, so I couldn't make a connection.  Don suggested I have simpler foods for lunch, so I had fresh fruits for lunch for a few days and felt a bit better.

The following Friday, August 20th, I had eaten a pretty large amount of nuts (almonds, cashews, and pecans) for a mid-morning snack.  I probably had more than I should, considering my weight and binging concerns, but I enjoyed them well enough.  A few hours later, the abdominal pains and bloating really got strong.  Around 2pm or so I had just bought myself a late lunch consisting of a grilled cheese sandwich and small chicken noodle soup from our building cafeteria, since I was out of fruit.  It wasn't fruit, but I figured it was simple enough for my guts.  I took a few bites/spoonfuls and couldn't eat any more.  I felt absolutely awful, so I left work to go to the ER and try to find out if something was seriously wrong with me.

Tip: If you can help it, try not to go to the Emergency Room on a Friday afternoon or evening.  When I first got there around 3pm or so, it wasn't too bad, but as the hours wore on, the waiting room filled up with all kinds of people.  Since I wasn't bleeding or unconscious, I wasn't as high a priority, so I had to wait several hours for a room/doctor.  In the meantime, it was very cold and I had someone bring me two blankets to drape myself in while waiting.  They took some blood and urine and did a few tests to check for gallbladder issues.  My tests were okay, I was told.

When I finally got to a room, I was in a queue to get an ultrasound on my abdomen, to see what's going on.  My gallbladder was found to be "distended" and possibly contain some sludge.  The doctors (there was a shift change before I was released) latched onto the gallbladder thing and advised me to avoid fatty, fried foods.  By this time Don had joined me and I looked at him in confusion.  Don vouched for me as we both told the doctor that we already eat pretty healthy now, especially since my yeast-free diet a couple of years back.  We prefer fresh produce, and indulge in "bad" foods only occasionally, here and there.  I really could not believe this was the cause of my problems, but that's the information with which they released me.  I was also given a Bentyl injection for my abdominal pains.  Oddly, the injection was pretty painful, even though I thought I was an old pro at getting shots, as I'd gotten years of them for my allergies.  I was also given a prescription of Bentyl tablets to take as needed at home, and was told to see my primary care physician for a more accurate diagnosis.

I saw my internist the next Monday afternoon on August 23rd.  He ordered more blood testing for thyroid problems and celiac disease (at my mention).  Those came back okay.  He told me to see a gastroenterologist to see if more testing is indicated, possibly a CT scan, scope, or camera pill.

I saw a gastroenterologist Friday afternoon on August 27th.  By this time, I'd tried the nuts again and noticed another episode of worsening symptoms, so I mentioned a possible nut allergy to the doctor, as well as all my other worries which were basically wallpapering the office with pamphlets of all the various conditions I'd read about online - diverticulitis, pancreatitis, gallstones, kidney stones, liver problems, diabetes, etc.  

He was nice enough, but didn't seem concerned about all the things on my mind.  He noticed I listed probiotics on my drug list and asked me how long I've been taking them.  A couple years, at least, I'm sure, I told him.  I added that they've helped me with the IBS when I was first having trouble, and that this bout didn't seem to be like the IBS I'd had before.  (I'm not experiencing any urgencies this time.)  Without ordering any additional tests, he instructed me to stop taking the probiotics for 2-3 weeks and see if my symptoms improve.  If not, see him again and perhaps he will try an antibiotic.  In short, he suspects a possible bacterial overgrowth in my gut.

Although the doctor never used the term, I recall having read about SIBO (Small intestinal bacterial overgrowth) being a problem for fibromites like myself.  Sure enough, the symptoms seem to overlap with my own, though I'm not having all of the symptoms listed. (Those symptoms associated with the "output" of the digestive system seem to be absent.)

So, I've stopped taking my probiotic since the morning of August 28th and I'll see if things improve.  So far, so good, but I have not tested myself against those nuts after the last two times.  Don doesn't want me to suffer, but I'm very curious to see if might are the cause of my problems.  I've also stopped having almond milk (I like Silk Almond Milk with my cereal in the mornings).  None of my doctors seemed concerned about the nuts, even though I mentioned them to each one.

I have an appointment to see my gastroenterologist again on Friday, September 17th that I will cancel if I feel better nearer that date.  I will keep you all informed about what happens.

Tuesday, August 17, 2010

The "I Don't Like This" List

So far in my exploratory journey of self-awareness, here are some things I've noticed about my behaviors that I don't like.
  • I pour a full bowl of cereal in the mornings, and sometimes I even refill and have a second bowl.  I love cereal and always have.  I guess it's one of my comfort foods.  But I always wish I could just eat a normal sized portion and leave it at that, like Don does.  As I pour the cereal, I wish I could stop myself at half a bowl, but I haven't been able to do that much lately.
  • I tend to do my binging at or after breakfast time on weekdays, or just before leaving work in the early evenings.  These are times when I'm alone and tend to cave to temptations.  In the mornings, I used to dig into the peanut butter jar (when we had some in the house), just before leaving for work.  In the evenings, I am usually good, but if I know there are snacks available, I taste, then ravage them.  It's almost as if the taste of the forbidden sets me off into some no-holds-barred eating event.  I need to be aware of this as it's happening.
  • My weaknesses are for: peanut butter, crispy salty foods like chips and crackers, sweets like donuts and cupcakes and chocolate treats, and I know I've always loved the blander cereals and breads.
  • I enjoy healthy foods but I tend to grab the quick stuff rather than prepare something healthy, even if we have the ingredients.  Perhaps having healthier options ready to grab will help me here.
  • I have caved into cravings, thinking I could handle an indulgence here or there, but it seems like one thing always leads to another and the indulgences get out of control.  I end up regretting them.
  • My fear of Fibromyalgia flares, along with some sort of procrastinational tendencies, seems to be standing in the way of my exercising more regularly.  I love taking walks with Don and have been in the habit of taking the stairs to the plaza at work, but I wish I could implement a regular exercise routine into my day again. 
  • I seem to have taken the easy way out on some of the above by using Fibromyalgia as a crutch or an excuse to do so.  If this keeps up, eventually I will not challenge myself to do anything anymore because I'm chronically ill.  I don't want to stagnate, regardless of the reasons.  I need to associate long-term healing with activities that may bring about temporary flares.

Now, here is a list of the things I would like to see as changed behaviors:
  • I'd like to be more prone to select healthier, lower calorie foods for snacking, even though it may not be what I'm craving or as easy to grab as something less healthy.  I like salads and healthy meals when they are served to me, but I have a hard time doing the work required to get these things prepared for myself unless I am motivated.  I want to be motivated more often.  I want to motivate myself more effectively.
  • I'd like to be able to handle an occasional indulgence without going completely overboard about it.  I want to be able to take a reasonable serving and put the rest away and forget about it, rather than obsessing and negotiating about it.
  • I'd like to be able to use my time more productively so I can feel better about myself, rather than beating myself up about wasting time doing frivolous things or nothing at all.
  • I'd like to journal more and be honest about myself in the journal.  It's my own private place - why does committing my feelings to words on paper seem so damning?  I seem to be much better at being honest in my blogs, which is even weirder, since this is public.  Perhaps I'm not comfortable with keeping things private.  I should be okay with having feelings that I keep private.
  • I want to be brave enough to stop and talk to someone when I know I'm about to have a binge.
These are just a few of the things I've noticed after my last blog's epiphany.  I will, of course, continue to observe and reflect on what I'm doing.

Wednesday, August 11, 2010

The Funk

I realized today, as I sat at home, sick with some virus, that I've got some issues to work out.  In a nutshell, I'm doing some binge eating, I've completely fallen off all of my "wagons," and I feel like I might be slipping into some sort of depression (again).  

I'm restless, unable to rest, yet unable to do anything productive.  There are things that are not that difficult that I should do, yet I don't feel able to concentrate enough on them to get them done properly.  Even this blog post had to wait until I forced myself to take action.  I've been kind of watching crap tv all day, not really able to understand what it's all for.  The reality shows are interesting, but I found myself wondering how those people manage to go to work and focus on getting their stuff done.  These hosts have jobs and they are helping people.  It sounds like a great gig.  Then I imagine what it would be like if I were to step into their shoes.  It was unnecessarily overwhelming.  Even a thought-exercise like that was too much for me today.  What is happening to me?  That doesn't seem right.

This time, however, I feel like I may be a tiny bit ahead of the game than the last time, simply because I'm not afraid to be aware of these feelings I'm having.  I'm behaving in ways I don't like and feeling somewhat powerless over the behaviors.  The behaviors come and go, so I have this false sense of control, peppered with extreme regrets and disappointment, disguised as mere setbacks, to help me move on.  

Truly, there is something messed up happening in my brain and I need to take more assertive action before it gets any worse.  I don't know how I'm going to proceed just yet, but at least I'm thinking about it and admitting that it's happening now.  People go through these kinds of things all the time, right?  I've seen movies.  People see shrinks.  Sometimes they find solutions, sometimes, they don't.  I was hoping that I could engage in self-therapy, what with all my researching knack and being cognizant about all this mess.  Then I realized that the journaling and the blogging has become less frequent.  I don't know how honest I've been with myself about some of these things in my own private journal, but I still feel like it hasn't been completely.  

I'm in a funk and I'm aware of it.  Perhaps calling it a "funk" is another way for me to soften the news to myself.  I don't know.  I'm still sorting through things and hoping to figure out a more effective plan for removing myself from it.

Does any of this make sense to you?  Does this kind of reflection belong in a private forum, rather than out here, for all the world to see?  Does it make you uncomfortable to know that this is what I'm going through?  My intent, of course, is not to make any of my readers uncomfortable, but rather twofold: to help me stick to pursuit of a plan to make positive changes, and to help my readers (I know someone out there must know where I'm coming from).

I've decided I am going to fight the funk and seek solutions.  I now know what hasn't been working for me with regard to the diet and exercise plans that I so carefully laid out in older posts.  I'm going to mark this as a less-ambitious, yet still very important, observational phase of my self-improvement project.  I need to understand when and why I fall into the kinds of behaviors I don't like.  Well, first, I need to identify all the behaviors that I don't like.  I'm working on this.  I'm hoping I can continue to keep my journey public, for the benefit of you and me.  

Let's learn together and pick each other up as we fall.  I know I'll fall.  I think it's important to realize that.  But I must learn to get back up again.  Feel free to publicly or privately share your thoughts on any of this.  I welcome your feedback.  Well, I guess I might not welcome some crap "suck it up" sentiments, but I am at least ready for that possibility.

Thanks for reading.

Tuesday, July 27, 2010

My Worse Half - Left

What a complete fudgebucket of a day today is!

My sleep has degraded until it just completely crapped out at 3am this morning.  I woke up and went to pee, thinking I could fall back asleep after coming back from the bathroom if I don't turn the lights on.  Yes, it's come to that.  I try to fool myself into thinking I'm not really fully awake.  It has worked occasionally, but not this time.  I got back to bed and realized my plan failed miserably, as I was not able to get comfortable, plus I was wide awake (even though I spent all day at work yesterday feeling like a zombie).  I gave up and spent my early morning hours playing on Facebook, waiting for the Sandman to beckon me back to bed.  He stood me up.

So I started my day and flipped on the news while I had some breakfast.  Things were fine until I felt like I needed to move my neck a bit, so I did.  Instead of feeling a relieving adjustment, I felt excruciating pain.  It feels like I've contorted it into some awful position, but all I did was move it a little bit.  I didn't even stretch it!

So, ever since about 6am this morning, the left side of my neck, my left shoulder, my left arm, and the left side of my back, all the way down to my left hip, are all seized up in pain that intensifies with any movement.  Lovely. 

I waited a bit to see if it would subside.  Eventually, I had to decide to use up yet another of my very few remaining vacation days to stay home and rest.  I'm on much more pain medication than I ever really consider using, especially on a work day or a day when I need to drive.  Since I'm home, I thought I'd "pull out the big guns" as my husband said.

I tried going back to bed after contacting my boss, but there was no relief there and still no sleepiness.  I should be napping or something right now, but I can't.  I'm feeling out of order and unable to sit still.  My eyes feel like I've been awake for weeks, but I can't sleep.  I can't even lie down comfortably.  I'm restless.  I can't even deal with the television today.  I turn it on, hate whatever is on, search for something else, give up, and turn it off.  I've done this about three times today.  

I feel irritable, I guess.  It's probably a good thing I'm home by myself.  I hate subjecting Don to my irritability.  What's weird is that I recognize it (I hope) right away.  It's such and icky, uncomfortable feeling that just feels incurable.  Bleh.  I just wish I could shake it off.  There's a lot that needs to be done, but I'm in no shape to do it.  Yet I can't seem to rest.  It all just seems wrong and messed up.  

I am going to see if there is a trigger point I can find that might be causing this problem.  I have my Thera Cane and Knobble here, waiting to help me.  I hope they can.  If that doesn't work, I've got a heat wrap on my shoulder and hopefully I can lose myself in some reading or something.  Sometimes distraction is the only treatment that works for me.

Sunday, July 18, 2010

Mallory, My Fibroduck

This is Mallory. :)  Mallory is going to help spread awareness for Fibromyalgia by posing for photos in various locations.  I take her picture and upload to Fibroduck's website, where everyone in the world can see her.

Her spots represent the invisible illness of Fibromyalgia, so you can tell she's not a "normal" ducky.  She's still trying to live a fun and fruitful life, even though she's different, just like I am.  Although sometimes it may seem strange to see a ducky in certain places, it's representative of how strange it may feel for us fibromites to be in this world - kind of like a duck out of water.  Even though you can't see how strange it feels, we feel it.  We compensate however we can and try to make the most of each situation.

I bought my ducky in a 3-pack from a local Party City store for under $3 and customized her with dots myself, but if you like you can order a free* ducky from Jamie Goodwin, the creator of Fibroduck.  (*Due to the expense of running the charitable website, she is now asking for just the cost of postage.)

Please visit Fibroduck online and view some of the photos uploaded there.  Download a poster and join in the fun by taking your own photos and uploading them to share with others.  It's a fun way to do something that helps fibromyalgia awareness, which in turn helps fibromyalgia patients like myself get better, more effective treatments and helps reduce confusion and misunderstanding of this chronic, incurable condition.

P.S.  I have two extra duckies I would be happy to give away to two lucky readers of my blog who are interested in joining up with Fibroduck.  If you'd like your own fibroduck, please let me know by leaving a comment or emailing me check the profile page from my blog's "About Me" page).  I will send a ducky to each of the first two people who are interested.  (Be sure to leave me your email address so I can contact you.) 

Tuesday, July 13, 2010

What Fibro? (A Wonderful Vacation)

I just got back from a great week long vacation with my husband.  We drove up to his old stomping grounds in Glennie, Michigan to stay with his childhood friend's family, out in the country.  

The weather was sunny and hot for most of the trip, and we did lots of fun stuff, like canoeing (my first time), four-wheeling (another first for me), target shooting, a pontoon boat ride (another first for me), attending a local 4th of July parade, even tossing the old Frisbee around.
We also visited several great places along the way, including our favorite brewery, Founders in Grand Rapids, MI, and attended a Weird Al concert in Indiana on the way back home.

I noticed that, despite all the activities, I felt GREAT!  I hardly dealt with any of my fibromyalgia or other health conditions myriad symptoms.  I had only little pain in my back, neck, and hands and feet.  There was no nausea, no headaches, no IBS problems, and very little (unearned) fatigue.  This was all a great relief to both me and my husband, as he worries about planning vacations around my unpredictable symptoms.  

I speculated as to the factors that may have been so helpful with regard to lifting my pains, fatigue, and health problems while on the road.  Here is a list of possibilities I have pondered:
  • I got lots of warm sunshine, which means I got lots of vitamin D.
  • I ate and drank lots of yummy food and delicious beers.
  • I had little stress thanks to no work, no chores, no commuting, even no diet.  My husband even planned all the stops and did all the driving.  (Thanks, Don!)
  • I had plenty of distraction with new people to meet, new surroundings, and new experiences.  I was busy!
  • I got plenty of exercise and walked a lot.
  • I got plenty of sleep.  (I slept surprisingly well on all the strange beds.)
  • I had plenty of FUN!!!
I had a wonderful time and am very thankful that I got to experience it without being a fibro-drag on the rest of the group.  (I hate slowing down everyone else's fun because I don't feel well.)

Unfortunately, now that I'm back to my non-vacation routine at home/work, I'm noticing the return of some symptoms.  My asthma seems to be acting up at both work and home, causing me to cough, clear my throat, and sound hoarse again.  (This was all gone on vacation!)  I am digging up and finding that molds in the indoor air of my office building and possibly in my basement where I like to watch TV in the evenings could be aggravating my allergic asthma and possibly adding a post-nasal drip, which could be behind the throat clearing.  The difficulty breathing seems also to be causing me to be exhausted during most of my day, and especially at the end of the day.  To top it all off, my comfy, familiar bed at home doesn't seem to be comfortable enough for good sleep, as my sleep seems more interrupted and broken now that I'm home.

To top it off, my native garden is under attack by the village (again) due to ignorant folks making anonymous complaints that have no merit.  The village is threatening to mow the entire parkway TOMORROW!  Little does the author of the threatening letter realize that our native plants benefit the entire neighborhood, while the turf-grass they so seem to adore is harmful in several ways.

In addition to all this mess, I'm dealing with several other stressful situations that have to do with others and things out of my control, as well.  I won't go into details, but it's so overwhelming that I feel compelled to keep making lists about follow-up tasks and chores. Ugh...

I suppose there would be no wonderful experiences if there weren't also awful ones, for comparison.  I'll try to keep that in mind and appreciate my health remission for the temporary phenomenon it was, and look forward to my next one.

I'm wishing you all a pain-minimal day!

Thursday, June 24, 2010

Thera Cane

Hey, d'ya miss me?  Hee!  I've been busy with life and not blogging much the past couple weeks.  I guess that's a good thing, no?  Anyway, I am feeling guilty about leaving you all with that fat whale picture on my last post, so I'm going to give you something new to chew one: Myofascial pain and trigger points.  

If you're not familiar with these terms, you can read up about them here.  There is also plenty of great info available at various reputable websites and books.  I had been diagnosed with Chronic Myofascial Pain before I even knew what Fibromyalgia was, so after the FM diagnosis, I got a great book (photo and link at left) about both of these conditions within the same person.

About a month ago, I saw my Fibromyalgia doctor for a follow-up appointment.  While I was discussing certain new pains, we talked about my Myofascial pain, trigger points, referred pains, and how to go about treating it all.  He is a good listener and we discuss every last bullet point and question that I bring with me during each appointment.  
By the way, my dear Fibrofriends, I have a special notebook just for these appointments, and I if you don't, you should definitely invest in a dedicated one.  You can write your questions down as you think of them, bring them all with you, then jot down the doctor's responses and instructions on the next page.  This system saves a lot of sanity for us fibrofogged people!
Okay, getting back to the point, I showed him some of the diagrams in my book that showed certain trigger points and their referral patterns, and added that I suspected these could be the source of my recent pains and discomfort.  He didn't claim to be any sort of expert (neurology is his specialty), but he agreed that it was a definite possibility worth exploring further.

The book also references heavily the works of Travell and Simons as the source of all the diagrammed information on trigger points and pain referral patterns.  The sampling of diagrams in the book I had were extremely useful in untangling the mysteries of some of my daily pains, and I was interested in learning more.  I had known of another book that focused solely on the self treatment of myofascial trigger points, but never took the plunge to buy it.  I asked my doctor about it, to see if he thought it was worth getting.  He was very enthusiastic about it and pulled an old first edition of the book I'd mentioned right off his bookshelf.  So, afterwards, I went straight to a bookstore to leaf through this book and, eventually, I decided to go ahead and buy it.

The book I bought is The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, Second Edition by Clair Davies (pictured at left).  This book is GREAT!  I have decided to sit down and carefully read it from beginning to end, but I have already skipped around to various relevant chapters many times to help treat my own pains, as well as a few of my husband's. 

In addition to the book, I also bought a couple of tools that are mentioned throughout the book to help already sore hands and arms from getting worse due to self-massage.  There are some spots on one's body that are just not comfortable to reach, much less apply pressure, and doing so with bare hands would likely do more damage than good.  I got the Knobble and a Thera Cane.  

The Knobble, which is a hard plastic little doodad that fits in a hand and has no corners or seams in it.  It looks a little like the nipple on a baby bottle, actually.  It went with me to my last two massage appointments and my therapist used it very effectively to put pressure on the knots in my shoulders.  She was thrilled to try it out and will be getting one of her own so she can use it on other clients.

The Thera Cane is a hard plastic small cane with rounded ends and several additional, strategically placed knobs that can be used in myriad ways to comfortably reach and massage all the muscles in one's body.  It comes with its own little booklet of various positions and techniques for common trouble areas.  The Thera Cane was actually suggested to me by that very same massage therapist several months ago, after she had tried it herself, but I wasn't quite ready for it then.  Now that I have it and understand more about the way trigger points behave and what kinds of pressure helps to relieve the pain they cause, I feel armed and ready for the world (at the moment).

I ordered a second book and Thera Cane because I was so enamored with the power they represent to me.  I am thinking of giving them away to someone I know who may need some non-drug pain relief.  

Now a warning: It was in the book and probably in the booklet, but of course I had to go and find out the hard way about this one.  When you get these tools and start using them, don't go overboard and use them too much on the very first day.  I figured all that myofascial release massage I've been getting done the past couple years must have warmed me up for using these things on myself.  Ha!

I had a knot in my left shoulder/neck area that was bugging me and the first chance I had, I grabbed that Thera Cane and applied the pressure on that trigger point spot.  It felt good to press on it without having my hands hurt from the work.  The leverage of the cane's shape definitely made it easier to work that muscle.  It also made it easy for me to overdo it, I think.  The next day, I was immobilized due to intense pain in that very same area, spreading to a larger area involving my back, neck, and left arm.  I was useless that day.  Luckily, it was a Sunday and I had nothing important planned.

The good new, though, is that the following day I was much better, with only residual pain.  I was able to go to the office and work a full day with only moderate pain, getting milder.  The pain was much more vague, no longer concentrated in that knot.  It seems I had dissipated it.  Eventually, I forgot all about the pain that I treated.  My cane is ready at my bedside, but I already haven't been using it much.  I use it when I need to.

It was a great investment and I'm happy to share my story with you all.  It is my hope that you can experience some relief using the knowledge that I have shared here.  As always, I'd love to hear from you about this.  Please feel free to comment.    

Note: Nobody is paying me to endorse any of these products.  I believe in people sharing their experiences for free.  Honest opinions are the only ones that count.

Monday, June 7, 2010

Don't Offer Me Any Donuts, Please

Apparently, the persisting tightness of my pants is not all in my imagination.  My last weigh-in this morning confirms what I feared - I'm slowly becoming... a whale.  

No, not a cute, baby whale.  A big, fat, blubbery, ugly one.

Okay, maybe that's a bit dramatic, but at 5' 4.5", I'm not tall enough to pull off a 150+ lb. weight.  I've never been this heavy in all my life.  I'm thoroughly disgusted with the weight gain especially because I know that I will have an even tougher time losing it, now that I have Fibromyalgia and Chronic Myofascial Pain preventing me from doing any meaningful exercise.  I can do some walking and some stretching, but that's about it.  Even after a walk, I've had to collapse from exhaustion upon my return home. 

All you super heroes reading this probably think I'm pathetic.  I might agree, but there's always that illness keeping me from blaming myself completely.  Perhaps that's the problem I need to address.  Although I can confidently blame Fibro for my pain and fatigue most times, I don't know that I can blame it completely for my fatness.  I've caught myself eating or overeating to try to distract myself from my symptoms, or to give myself some enjoyment in a painfully frustrating day.  It's not a bad thing to try to make myself feel happier, but turning to food - especially sweets and "bad" foods - is not a smart thing to do.  Frankly, I'm surprised I could let something like this get the best of me for so long.  Why did I wait to have this epiphany until now? 

Staying on the wagons I've laid out has proven to be much easier said (or written, rather) than actually done.  My flares are frequent and I never seem to know how I'm going to feel at any given minute.  I may wake up okay, then be fighting tears by evening - or vice versa.  I have skipped so many of my morning stretches, my strength-building exercises, and haven't done any regular walking or other aerobic activity, as I had planned.  What's more, I've been skipping all the Calorie Count logging I thought I would be doing to help me monitor my intake.  A little ice cream here, a couple beers there - and suddenly, I'm busting out of my jeans.

When I saw that horrid number on my scale this morning, I was going to keep this weight thing my dirty, little secret.  I decided it would be far too embarrassing to tell anyone about this.  I even considered removing that ladybug ticker from the bottom of this blog.  But after thinking a bit about it, I decided this isn't the worst thing to be guilty of.  Anyone with Fibromyalgia will certainly understand, as I'm sure the illness creates this problem for many of us as we struggle to survive the pain and fatigue and stress of life.  I knew someone out there would know all too well how this happens, and perhaps offer me some support.

I'd like to rise above this thing  I'd like to take this challenge and turn it into an opportunity to feel good about myself, instead of continuing to pity myself about how awful things are.  Sure, I might fail, but I'm not going to know if I succeed unless I try.  I'm going to try to do better and hopefully, once I can see any sort of progress, the momentum of success will help me to keep going.

That said, please do me a favor and don't offer me any donuts.  I love food, especially desserts, but my allowance for these kinds of foods needs to be drastically reduced.  Want to take a short walk with me?  Care for some healthy veggies instead of that hamburger?  Forgive me if I pass on your famous, homemade whatever.  Believe me: I really do want to have it, but I've got to take care of my body before it gives out on both of us.  I don't expect you all to change your behavior for me - I know you mean well.  I'll just have to resist temptations a little better and be braver about risking flares for the greater good.