“So so” is good, very good, very excellent good; and yet it is not; it is but so so.

Ye Olde Blogge Goeth Green Today...


[originally posted 9/8/2009--and still quite appropos, sadly]

That’s kinda how I’ve been feeling lately. I’m having a hard time getting jazzed about life. And I don’t know exactly why. I don't like it when I feel this way, but I don't know what to do to change it. Stuff that I usually enjoy just seems like too much effort. Cher's "Snap out of it" technique just doesn't do it.....




I think it’s a Fibromyalgia thing. I don’t have as much pain as others I know—or I’ve just gotten way too used to it—but I do have a whole laundry list of other weird symptoms. I have a constant high-pitched sound in my ears; I learned that was probably Fibro related doing research online. I seem to constantly have a cold or a virus of some sort—fibro has wrecked my immune system. I get blurred vision—another symptom I learned about doing research. It just gets better and better…..



And of course, there’s the whole sleep thing. God I miss the days of my youth when I could crash for 8 hours no problem. I didn’t know how good I had it. Now it seems like the frickin’ alarm clock is going off right after I’ve finally nodded off. And always just as my dream about Paolo the Pool Boy is getting interesting...... Then I lay there and play “If I don’t do such and such, I can stay here for an extra 5 minutes.”



They say you can’t—or SHOULDN’T— make up for lost sleep on your days off. But that’s what I find myself doing. Then I feel guilty for it. I can’t win.



Any suggestions? Would winning the lottery help? I know Paolo would, but he's yet to show up in my real life.....


3/27/12--the illustration kinda sums it up--my life seems to be melting away and I can't stop it.     I am so exhausted by Saturday that I wind up crashing most of the weekend.   The only plus there is if I don't leave my room, I can't spend any money I don't have.

Something's gotta give--soon!

"…in form and moving how express and admirable…."

[they say you can never be too thin...]

Okay, so I’m taking a short mental health break yesterday morning at my desk—after a really rough start to the day at 8am—and I’m reading some of my favorite blogs. Lo and behold, Lora over at fever is giving me mad props as she’s thanking me for the “Honest Scrap” award. Awww, shucks girl—your welcome. I love your blog.

Lora mentioned that she started reading my blog because I’m a fellow fibromyalgic: “I love her because she lives her life despite all these things” [fibromyalgia pain, etc.] Again thanks sister…. But I started feeling guilty cause I don’t think I have much pain, like so many sufferers I know. Then the rest of yesterday happened….

Not that it was particularly bad, but it turned out to be one of those days where I “hit the wall,” as I like to put it.

I spend my day answering phones and performing other administrative tasks for a team of doctors—I don’t get to move around as much as I should. So, as I was making my way to my car at about 10 after 5, the aches started. I got home and up to my apartment and plopped in my chair. Okay—where’s the Ibuprophen? I popped 800mg [perfectly safe per my docs] and made a bowl of pasta with parmesan for dinner. It hurt to eat it.

That’s when I know it’s bad. Real bad—ya know: WallMe

All I could do was crawl into bed. I hate when I get like this—there are things I want to do, NEED to do, but I’ve run out of reserves for now and need to replenish my supply somehow.

Of course this time of year is hectic and that stresses out those of us that deal with the vagaries of fibro. Add to that the play I’m directing—it’s getting down to the wire and I just keep seeing all the things that need to get done. Thank God I have my awesome friend Alan as my A.D.

So, anyway, I understand why I hit my latest wall—and I’m trying real hard to learn how to avoid the walls, but….

I was diagnosed with this thing 15 years ago and they don’t know that much more about it now than they did then. I don’t know if I have less pain and more fatigue than others or I’ve just gotten so used to pain that it seems “normal” to me.

Oh—and: Those Lyrica commercials piss me off—they seem so condescending. And who the f wants to deal with the side-effects they spit out at 90 miles an hour at the end of the commercial.

Can’t wait to see what my “normal” will be in another 15 years…..

I am not in a giving vein today

About 25 years or so ago, I started donating blood at least twice a year. This was the result of the Hospital at the University of Penn taking my dying 33 year old brother as a charity case and my wanting to do something to pay them back. [Some other time I will go into Bill's story.]

I found out my blood type the morning after I gave birth to my daughter... You see, I'm B negative, which is apparently a somewhat rare type. I had heard scary things about RH negative moms and freaked out when the doctor casually mentioned it. He calmed me down and said it just meant I needed to have a shot after each delivery and get extra blood tests during subsequent pregnancies to make sure the baby and I weren't harming each other. I followed orders and both kids were fine. It wasn't til I started donating that I discovered I had a rare blood type.

Like I said, I donated at least twice a year for quite some time [you have to wait at least 56 days between each donation]. I was pleased to be able to do some small thing to help others; even when the pre-donation screening and questionnaires got longer and more "invasive." The stuff they ask!!

Unfortunately, I haven't been able to donate as much lately. You see my fibromyalgia [or maybe it's the lack of good sleep]seems to have wreaked havoc with my immune system and I catch all kinds of colds and bugs. I think I spend about 12 days out of every 30 fighting off something. Not fun. It's bad enough that I fell crummy so much of the time, but now I can't do one of the small things to help others that gave me so much pleasure.

So, I'm asking you to please step up and donate if your eligible--it doesn't hurt and you'll really feel good afterwards. Plus, you get free cookies and juice.

What light through yonder window breaks...

It is the sunrise--and I'm wide awake.

Can anyone tell me why, on my days off, I wake up with the dawn...even after not being able to fall asleep til the wee hours?

Sleep--or the lack thereof--has become a huge issue in my life. It is very frustrating, and debilitating, to spend night after night tossing and turning. I've always taken a long time to nod off, but once I was asleep, I was out. At least til about 15 years ago...

Wakefulness started when my kids were babies--a mom always has one ear tuned to whether her kids need her or not. My daughter was a night owl; she didn't want to miss anything, even as an infant. My son had colic, but once he conked out at night he was fine. As toddlers, she still took forever to fall asleep and he'd zone as soon as his head hit the pillow. But that meant he'd wake up at the crack of dawn. My window of opportunity was very small--but I made the best of it.

Teen years brought wakefulness of a different kind. But once I was asleep, it was deep and restful. Not with Fibromyalgia. The past decade has been a battle to reach that nirvana of true restorative rest. I get what Heath Ledger and Michael Jackson were going through. It is the most frustrating feeling in the world. I've tried all of the homeopathic remedies--with so-so results. I've tried prescription drugs--but felt like a zombie the next day. I even participated in a drug study for a new medication. It worked rather well, but I have no idea what it was or whether it ever passed approval.

So what does a chronic insomniac do? Well, on the weekends, I just roll over and try to catch up on what I lost during the work week. "To sleep, perchance to dream."

Something Wicked This Way Came...

I want my body back. I don’t know exactly when it happened, but somehow I lost control of it and some demon spawn or something is wreaking havoc on me.
About 15 years ago or so, I was diagnosed with Fibromyalgia. For the uninitiated, this is an auto-immune disorder that is characterized primarily by migrating joint pain and sleep loss. They don’t know which comes first: the chicken or the egg—is it the joint pain that disrupts the deep restorative sleep cycles or is it the lack of good solid sleep that causes the joint pain. Either way it’s no picnic; sufferers tend to spend their waking hours in a “Fibro fog.” Oh for the days when I could blissfully sleep for 8—10 hours, dream wonderful things and wake up raring to tackle the day ahead….

Fibromyalgia can also so totally compromise your immune system that you fall prey to every bug that comes down the pike—also exhausting [and a bit depressing]. I have lost track of the colds and stomach viruses that have caused me to miss work and social engagements. Treatment for Fibro is still nebulous at best. It primarily strikes women in the 30—45 age range, but some men have been diagnosed. There is no “cure,” and the ailment is strongly linked with chronic fatigue syndrome. Are ya jealous yet?

Okay, then when I was about 44, I started with night sweats and irregular cycles. So, off I go to my GYN, who chirpily informs me that I am “peri-menopausal” and this could last for 10 years. Ohhh, sign me up!! [As it was, the “factory shut down” about 8 years later—but just to add to the fun, the night sweats have hung around. And I generally wear lots of sleeveless tops with sweaters in the dead of winter to combat the permanent daytime hot flash].

Throughout all of this, I am trying hard to be active and stay in shape, but… well let’s just say “the spirit is willing, but the flesh is weak.” After putting in an 8—15 hour day [I worked 2 jobs for 10 years in order to keep my head financially just barely above water], I had absolutely no energy to think, let alone exercise. Then, I went through a very painful and protracted divorce….
Okay, ya still with me??

I start reading health articles and see numerous references to how lack of sleep causes weight gain. Strike one. Then a little while later, I see articles about how stress causes the body to store more fat than it needs. Strike two. And we won’t even go into what menopause does to a lot of women…..

To complete my trifecta of physical fun, I took a nasty fall this past March and damaged the crap out of my left knee. I am still gimping around following surgery—and going to physical therapy twice a week. Needless to say, I can’t even go walking for exercise at this point. I avoid mirrors so I don’t have to see what I look like these days. Fortunately, though, my sense of humor has stayed intact.

But what I keep thinking is: What gods did I piss off to create this storm of physical (and mental) limitations I find myself in? I’m a nice person. I try to do good deeds, I floss. God, I miss the 2 decades post puberty where I had a pretty good figure and could dance and jog—and even do an occasional cartwheel. At this point, I feel my only option would be a trip to Lourdes…. Anybody got any suggestions?