Monday, June 29, 2009

My New Mascot: Fibro Frog

Fibro Frog(Sung to the theme for Spiderman)

Fibro Frog,
Fibro Frog,
Steals your thoughts from you
like a hog.
What's that word?
Never mind.
I can't even remember why
I spoke up...
Here comes the Fibro Frog!

Thursday, June 25, 2009

A Typical Day for Benia

Once again, I have managed to be very late to work today. I am very lucky to work at an office where I can be flexible with my hours and adjust as needed. However, there are certain core hours during which we are all supposed to be in the office and I know how hard it can be to make up time if a deficit builds up. Fibromyalgia be damned!

In case anyone wonders why I am always coming into the office so late, please know that I typically eat lunch at my desk and work late to ensure I earn an honest week's pay. I will also expose some of the mysterious details of my frequent lateness here, in this blog.

As I have already outlined in an earlier post, I take a lot of medicine to try to control the many symptoms of Fibromyalgia. They don't relieve me completely, but they all do a little something for me. Among the drugs I take are two that help me sleep - one helps me to be asleep, the other helps me to get all the proper stages of sleep. Sleep is typically the first focus of treatments for fibromites, because studies have found that anyone with inadequate sleep has an increased sensitivity to pain. For fibromites like me, that means I feel worse, sleep worse, etc. It becomes a downward spiral of maddening symptoms. So, doctors encourage us to get as much sleep as we can get.

Getting back to my day, I take medications that help me sleep. I typically get to bed around 10pm on a worknight. Getting up at 6am or even 5am used to be fine for me before the FM, but now, it's unthinkable. Don lets me sleep until he leaves for work, which is usually closer to 7am or 8am. I am grateful that we have found this system, but here is the first reason for my tardiness.

Another typical symptom of Fibromyalgia is muscle stiffness that is especially bad in the mornings. I experience that morning stiffness just about every day. When I first wake up, my muscles are very tight and painful. Walking and moving around is challenging for me, and I need to be especially careful not to hurt my stiff muscles and cause a flare. As a result of this symptom, I am very slow to get to the bathroom, get to breakfast, shower, get dressed, etc. I probably need twice the amount of time it would take a normal person to do the same morning routine. I don't want to go slow, I have to.

Next, is the inevitable IBS episodes. I usually eat cereal with unsweetened soymilk for breakfast. When the IBS is especially bad, my belly starts to hurt right about the time I'm finishing up my cereal and I need to rush to the bathroom to violently dispose of the gas and, well, you know the rest - it's ugly. On other days, there is no urgent rush, but there is usually discomfort and pain, and a waiting game in the bathroom for some relief. There are some days when relief doesn't come, and the clock urges me to get going and all I can do is hope things will work themselves out later on. Today was one of those days. I am grateful that I am usually limited to having the more violent episodes of IBS only after meals. Back when this was still new to me, I hadn't established a pattern, and the unpredictableness was adding stress to my days. Knowing really is half the battle.

Still with me? I'm impressed!

Among the other symptoms I typically endure on any given day is a daily nausea. My doctor and I speculate that the muscle relaxer that I take might be responsible, or at least contributing to, this symptom. It's not usually the nagging kind of nausea that feels like vomiting might actually be a possibility, so I'm glad it's only a "fake nausea" that I can usually handle. I am noticing that I get this feeling of nausea around lunchtime most days. Luckily, I am able to eat and it helps ease the feeling a bit, but it returns after mealtime is over, unfortunately. (Of course, this makes it tempting for me to eat when I probably shouldn't. That's something I need to watch as my waistline expands.)

I also have been dealing with "fibrofog", as I mentioned in another post. This has been widely reported among other fibromites, and includes problems with concentration, being distracted, being unable to think, having difficulty finding the proper words, memory issues, and other cognitive problems. I discussed this with my doctor during my last visit, and he informed me that getting a proper quality (not quantity) of sleep is crucial to combatting this symptom. What fibrofog does to my daily experience, especially in the mornings, is slow me down in making sure I have taken all my meds, put all my clothes and accessories on (can't leave the house naked), taken my purse, keys, lunch, and anything else I need for the day with me. Today I needed to remember to take test results with me for my doctor's appointment later on. Forgetting things after I've already driven down the block has occurred, though I'm proud to say it has become less frequent.

There are many other things I may have to deal with on any given day, including:
  • headaches
  • vision problems
  • pains of all types, styles, and severities, in all areas of the body
  • fatigue, low energy (read the famous Spoon Theory)
  • skin sensitivities (itching, hives, etc.)
  • annoying tingling sensations in any areas of the body
  • dizziness with or without vertigo
  • sensitivities to: sounds, lights, visual patterns (like half-closed blinds, small checkers), smells and chemicals, and/or drugs
By the time I get through the morning dose of medicines, breakfast, vitamins, IBS, stretching and exercises if I'm lucky, showering, getting dressed and made up, and preparing lunch and whatever else I need for the day, I am typically out the door anywhere between 8am and 9:15am, with frequent exceptions (like today). Today, I left home at 10am, and I hated it. I have a doctor's appointment today at 5pm, so I cannot make up the time I missed today. Luckily, work is not as frantic today as it was yesterday.

So that's a typical morning for me. I'm sorry if you suffered an inconvenience from my tardiness. I hate to be late, but because of the fibrobeast, I must do whatever I can to save myself first, before I can think of helping you. I hope you understand. Thank you for reading.

Saturday, June 20, 2009

"Bunny" and the Doctor Visit

I decided I'm going to call my homemade rice-sock "Bunny". It's gray, fuzzy, and cuddly, just like the baby bunnies running around in my yard lately. Isn't she cute? :)

I am finally feeling better after that last icky flare of mine. I am wondering what it was that triggered the pain in my neck that spread its ugly tentacles into my back and limbs. Perhaps I overstretched that side. I know I have had a history of stretching more than I should. I'm told the stretch shouldn't hurt, but
it's hard to know how much of a stretch is sufficient if I'm already in pain before I begin. I can believe that I may have stretched more wherever it was painful, in an attempt to loosen up tight muscles there. Perhaps that is a mistake. I will have to keep that in mind during my future stretching routines.

Yesterday I visited my Fibro specialist - a kind neurologist who is working with me to try to reach my pain-fighting goals. I told him of my recent struggles with vocabulary and other fibrofog issues. He asked if I was sleeping okay. I rely on my Zolpidem (aka Ambien) to help keep me asleep throughout the night, and have not noticed any changes in sleep habits lately. He reminded me that the Zolpidem may keep me "asleep", but it doesn't help me reach those deep stages of sleep of which Fibromyalgia robs me.

The Doxepin I am now taking is supposed to help me get better quality sleep - those deep stages of sleep that I can't otherwise get with Fibromyalgia. Since I am on a low dose right now, he is having me double my nightly dose of Doxepin to help me get better sleep and see if it helps with the fibrofog. I have started taking 2 capsules at bedtime last night. It's probably too early to tell, but I am feeling pretty coherent at the moment, despite being awakened several times by my husband's (loud) pager. (He's on call for work this week.) Poor Don had to work on IT issues for work since about 4am today. He is more tired than I am today.

I had to put the daily workouts on hold during the recent flare-up. I think I need to be even slower in progressing than I have done, just to make sure I don't cause another flare. The doctor suggested a yoga class if I am able to do it. I think that might be something to think about when I am able to figure out my stretching limitations and work my way up in stretch/workout time a bit. He agreed that it's extremely important to take small steps toward increasing my activity levels to avoid flare-ups.

Armed with the medication and knowledge I have, I'm hopeful that I'm going to have more good days ahead.

Wednesday, June 17, 2009

Mack Truck Collides in Fibrofog

Today I woke up with such a stiff and painful neck that I couldn't even imagine moving, as I told my husband Don this morning as he kissed me good-by and headed off to work. It even hurt to lay still, but somewhat less than when I moved or even tried to move. I remember I turned my head about half a degree to the right to see him from the bed while he was talking to me, and it was some of the "loudest" pain I've ever known - screaming! Despite being all out of sick days for the year, I notified my boss that I needed to stay home and repair myself. That means rest and extra meds today. Extra meds likely means more fibrofog, too, and I'd already been having a bad bout of that.

Writing of fibrofog... I heard myself turning into an apparent idiot yesterday, while the damned fibro-monster stole my vocabulary from me as I watched in utter horror. Okay, maybe that's a bit dramatic, but it was definitely noticeable and I sure didn't like it.

I was in a meeting at work yesterday. I
t was my meeting; I was there to gather requirements for a new project. My current boss and another manager at the company (my old boss) were the two other attendees in this meeting. The pauses I was taking to find the words to express myself were embarrassingly long, especially in comparison with the cadence of the conversation that was going on between the other two people in the room. I started to say something, then I just watched their eyes as they both waited with anticipation of what I might finally say. And I couldn't wait to find out what I'd say, either. What I settled for, eventually, was somewhat acceptable, but not optimal. I continued through the meeting, aware of this handicap, as best as I could and got the information I needed, fumbling along with lesser words and phrases than I intended to use. It's like my language skills are just limping along, crippled and deformed. If I had waited until I'd found the words I really wanted to use, it would take too long and I would lose my turn to speak. It's so frustrating, especially during situations like this, when my income is on the line.

Later that evening, I went out to get some tacos for dinner with Don at our favorite local taco place for "Taco Tuesday". I usually do the ordering when we go, so this experience was nothing new for me. Thanks to the fibrofog, though, I felt like I was going through the usual motions, but needed more time to think about what I was doing and saying to make sure it was correct. The poor kid taking my order must've wondered if I was retarded or something. I sure felt like it. Actually, I take that back. I have heard retarded people speak and they seem to do just fine. I don't know how to compare myself when I'm so foggy. "Der... um.. I'd like....two....tacos....." Ugh! What have I become?

While we ate our delicious tacos, I mentioned my recent struggles with language to Don. I seem mostly fine when I converse with him. There are times when I need to pause or whatever, but the casual conversation probably helps make it less noticeable. He asked me (a kind of "oh no" asking) if FM affects my brain, too. I explained, briefly, that yes, unfortunately, FM affects the central nervous system, which affects EVERYTHING, including my brain. It's a bitch of a disease. I forget that he isn't as in tune with all the subtleties of FM as I am. I am constantly reading up about research and other people's experiences with this condition - mostly to help me understand and cope with it all. I know how complex and all-encompassing it is.
Fibromyalgia really is a life-changing condition, despite any outward appearances of "normalcy" among its victims.

At any rate, I am here at home, trying to relax, but letting all the nagging responsibilities of everyday life interrupt my sanctity. I am sweating a lot now, so I replaced my hot tea for a cold beer - a delicious Goose Island India Pale Ale. I figure I'd enjoy the flavor as well as the pain-masking benefits of the beverage at the same time. Maybe it will help me relax, too.

Tuesday, June 16, 2009

Nauseating Neck Pain, Back Pain, IBS, Vision Problems, and Fatigue... or... Just Another Day with Fibro

The title about says it all, but I'll elaborate a bit.

I was doing pretty well after a moderately active weekend. My back has been sore from all the bending I'd done while working in my
native garden Sunday, but it was worth it. I enjoyed the great weather and all the sites and sounds of our wonderful yard. We watched a baby bunny nibble on the grasses in our flagstone path and saw and heard many, many birds. I love Native Suburbia!

Well, today, I was awakened by the house wren that lives in our neighbor's birdhouse. The birdhouse hangs near our fence, and he and his mate are always chirping away on the fence or in our trees for all the world to hear. I love him!

Anyway, I went about my usual morning routine. I ate breakfast, took my vitamins, did my morning stretches, dealt with a brief episode of IBS, then I took my shower. As I was toweling off, the back and left side of my neck started a stabbing pain. This is a trouble spot for me, and I remember a previous start to pain in this area started after a morning shower, too. Perhaps I'm moving in an odd way to dry off? At any rate, it's the kind of pain that makes me instantly feel a bit nauseous. I drove to work with my warmed rice-sock on my shoulder and popped a Tramadol when I (finally) got to work today. (I ended up having to reschedule a morning meeting that I couldn't make, thanks to my symptoms slowing me down.)

Meanwhile, I've been having problems with my vision again. I remember having constant problems with my visual acuity immediately after I was rear-ended. I went to the optometrist and he scratched his head as he reported that my prescription had changed drastically - by +1.00 in both eyes, although my previously perfect reading vision suddenly sucked. (I wear contact lenses.) This is unheard of. Whose distance vision improves? And so suddenly? And I'm not ready for "reading glasses".

After doing some reading, I chalked it up to new muscle tension around my eyes, possibly squeezing my eyeballs enough to make a difference in the shape, and thus, my vision. It's a theory and I haven't read anything that confirms that this could actually happen, but I'm going with it. The doctor had nothing better to offer as an explanation. If you have any experience or knowledge about this, please feel free to comment.

Well, lately, I'm experiencing the same kind of problems with focusing as then. I'm having trouble reading the computer screen clearly, signs, etc. I can do it after a few seconds, but it seems to take conscious effort, and it still doesn't seem to be quite right. I don't know how to explain it, but there seems to be an uncomfortableness in what I look at. I believe the massages, muscle relaxants, and stretches are helping to relax my muscles and myofascial trigger points. Could it be possible that the muscles around my eyes are also relaxing and perhaps adjusting the shape of my eyes again? I hope not. I just bought another year's supply of contact lenses. :P

The last time I brought my rice-sock buddy to work with me, I felt a bit better toward the end of the day. I am hoping I will at least make some progress on my neck, if nothing else. Hopefully tomorrow morning I'll be able to hop on the elliptical or do some more walking for my little workouts. I don't want to be a quitter!

Tuesday, June 9, 2009

Getting Back on the Hamster Wheel

Ah, yes, regular exercise... it's not a cure, but it is supposed to help lessen at least some of the many symptoms of Fibromyalgia. I've read it. I've heard my doctor say it. I also know it's just good to move around a bit, generally speaking. It warms and loosens up the tight muscles and helps keep the blood flowing so all those chemical processes have a chance to work (as best as they can).

With my recent fibroflares, the flu, fatigue, fibrofog, and whatever other "F words" have been affecting me lately, it's been difficult to even imagine voluntarily moving around, especially without at least getting some household chore done at the same time. I just couldn't commit. Well, now my pants are getting tight.
This can't go on; it's time for action! The daily stretching routine and sporadic walks around the block or so are fine and dandy, but I need to make sure I get regular exercise every day. I know that if I don't use my muscles, I'll lose them to atrophy, which causes that vicious circle of FM symptoms and inactivity.

My doctor advised me to use the following guideline for adding activity to my day.

stretch time = exercise time

As I briefly mentioned in an earlier post, I've been doing a daily, gentle stretching routine each morning that takes me about 5 minutes to complete. It covers most major muscle areas, starting from the neck, all the way down to my ankles. I also add new stretches that I like now and then.

Yesterday my "just one thing" was making sure I started doing exercises again. My last flare has finally subsided enough to allow for some very minor activity. To start out, my exercise routine time matches my stretching time at 5 minutes.

Yeah, I know all you "normals" out there are probably scoffing at all this hullaballoo over 5 minutes of activity. I can just hear you going "What? Five minutes?? Pshhh....". That's okay. I used to not know about people like me until I became one. Well, so you know, I'm not normal anymore (was I ever?) and now, for me, doing exercise is a big deal. I know my fellow fibromites understand.

Besides, I'm embarking on a personal goal and announcing it to the world. What a commitment! Aren't you impressed? ☺ I am using you all as additional inspiration to continue, even when I'm tempted to quit. And so far, so good. I did 5 minutes of walking around the first floor of my house yesterday morning, and today I did about 6 minutes on my elliptical machine, with some stretching before and afterwards. So, I'm proud of myself.

Tomorrow morning, I will attempt 7 minutes of stretching and 7 minutes of activity.Keep me going, guys! Don't let me give up.

Monday, June 8, 2009

Just One Thing

One thing I've learned about pacing my activities is that you can compromise between the feeling of complete procrastination and doing it all (and suffering from a flare). I have named my compromise "Just One Thing".

For me, knowing I have a long task list is stressful, and we fibromites know that stress is a big contributor to our symptoms. Without going overboard to do everything at once, I can settle for doing "just one thing" instead.

For example:
I walk into our messy kitchen after a full day's work, frown and sigh at the time and effort I imagine it will take me to get it all cleaned up. After the initial shock and disappointment of it all, I remember my philosophy and pick one thing that I can do right at that moment to help reduce the overall load of the bigger project. For instance, I can empty out the dishwasher and put away the clean dishes. After the dishwasher is empty, I may be tempted to go ahead and do another thing, like loading the dishwasher with the dirties. Depending on how I feel, I may or may not, but the pressure is off. I will first consider the effort I've just spent and whether or not I should take a break to prevent a flare. The dirty dishes will wait until later or tomorrow if they must. Then, when I can, I do "just one thing" again and make a little more progress.

If you tend to get overwhelmed by the chores and tasks ahead of you, pick one thing to do today. It takes the pressure off and grants you that peace of mind that finishing any task can give.

Thursday, June 4, 2009

The Other Shoe Fell

I woke up yesterday, still feeling pretty great, although I had a very crappy night's sleep and kept waking up from frustrating and stressful dreams all night. I couldn't fall asleep again after 4:30am, so I got up pretty early and decided to go ahead and start the day around 5am.

Everything was fine until some time between my shower and getting dressed that morning. I realized that the left side of my neck and shoulder were in substantial pain, and my neck movements were severly limited as well. The pain reached through my entire left side, left shoulder blade, and even managed to get through my hips and into my leg and foot at times. I tried to do some minor stretching, as I normally do each morning, but I decided it hurt too much and couldn't be good to force it. I pressed on, popped a tramadol pill, and went to work, spending all day yesterday in this pain. I also brought along my rice sock for localized heat. I got some odd comments about it now and then, but I expected that. I guess it does look a little odd to be wearing a fat sock over my shoulder at work.

The most surprising part of my experience yesterday was that I noticed that I managed to make it through the day still smiling and positive. Usually, when I'm in a lot of pain, I'm very grouchy. I'm pretty proud of myself for managing not to fall into that funk. At a fellow fibromite's suggestion, I went home and took a hot epsom salt bath, hoping it would help loosen up my tight muscles and ease the pain a bit. A little beer (a "drinky-poo" as my

Today, however, is a bit more challenging than yesterday. I a lot slept better last night, but woke up with those same pains, plus a headache, and plus feeling super stiff all over. I'm also nauseous right now, as I have been most days lately. I really did not want to get out of bed today. I am out of sick days for the year, however, and besides that, today is a busy day at work, due to a software release. There is lots of testing to do and as the Senior Business Analyst on the team, I need to be vigilant, in case anything arises that should prevent us from going ahead with the release. I am also out tomorrow for a chest/abdominal/pelvic CT scan (with contrast - uck!) that is going to make me feel even worse than today. I popped a tramadol again this morning, and here I am again, working (well, blogging, at the moment,) with my warm sock buddy attempting to sooth my nauseatingly painful shoulder/neck.

I am looking forward to my bi-weekly massage after work today. I'll have to let Carrie know that I'm feeling fragile - almost brittle - today, and to go easy on me this time.

Monday, June 1, 2009

Big Weekend

I just said "good-bye" to my husband's parents and sister and her boyfriend after a long, four-day weekend visit with us. My husband, Don, was great and handled most of the hosting responsibilities, including pretty much all of the cooking and planning. (Thanks Don!)

Yesterday, we took the train out to downtown Chicago and spent the whole day wandering around Millennium Park and the city streets, taking pictures, drinking, eating, and having a good time. We even went out to karaoke at a bar near my home after the train ride back. We all drank and sang and stayed out until 2am last night!

I knew a whole day of walking was going to be hard for me, but I committed and looked forward to the event. It went surprisingly well, although I am still waiting for the proverbial other shoe to fall. I am only dealing with minor aches and some fatigue today, but I never would have guessed that I'd be functioning after yesterday's full agenda. I thought I'd at least be dealing with a hangover, but I must have kept myself properly hydrated, because I am luckily not hungover at all.

I am still a bit skittish over a probable delayed reaction to all the activities, but I just decided that I'm going to enjoy myself for the moment and not worry about a flare until it actually happens.