Thursday, July 12, 2007

terribly early in the morning

One Good Thing - For My Teeth, And Maybe Yours

Last week, after about 7 years of use, our Sonicare toothbrush base thingie died.  Leigh-Ann was heartbroken, and we suffered for a few days with regular toothbrushes, but her very expensive upper teeth were unhappy.  For that matter, my whole mouth wasn’t thrilled either.  We looked for our model everywhere, but even on eBay, it wasn’t available, so we had to get the new and improved Sonicare Elite e9500.  It is simply fabulous.  Your teeth will have never felt cleaner after a brushing.  And, when you can barely get out of bed, it’s nice to know that your teeth feel sparkling clean.

Wednesday, July 11, 2007

late at night

Ugh, Has It Turned Into Chronic Fatigue?

I cannot begin to tell you how much I hate feeling useless.  I’ve spent at least half my life playing in basketball or softball games or going to practice or playing in the street with my brothers and neighbors.  Now, it was all I could do to get up to make sure the dogs went out (I don’t even have to walk them, just let them into the yard and then back upstairs), much less get some food.  I desperately want to shower, but that’s duking it out with wanting to lay down again.  Luckily, I’m not stinky, because that would drive me crazy.  Mostly, I’m just sad.  I used to enjoy bedtime, but when it’s always bedtime, it becomes a whole lot less enjoyable.  On my good days, I feel like a normal human being and can do normal stuff.  But, those days are pretty rare.  Mostly, my body wants me to sleep...and sleep some more.  I’m so lucky to have a job where I work from home, and work whatever hours of the day that I want to work.  I’m good at what I do, so I can generally have my brain compensate for random useless busywork.  I’d kill to be able to keep a schedule, getting up at a certain time, working certain hours, being off certain hours.  Now, whenever I’m up, I need to work.  Heh, or blog about feeling crappy.  I’m not suffering from clinical depression; however, this is totally depressing and is taking a toll on me.  It started with the herniated disk, but I’m even less functional now than I was with the herniated disk.  I didn’t really think I was suffering from chronic fatigue, until I read about it.  Hmm, all the symptoms, they fit.  Great.

I swear, tomorrow I’m going to find something fun to write about...if it’s the last thing I do.

the wee hours

Hey, You Know What’s Funny?

You know how I was all pissed off about being told to take a drug vacation?  Well, I’m still pissed off about it because it came from a “drugs are scary” thought process, not the thought that they just aren’t working very well for me right now.  I think Methadone has screwed up my pain receptors and for now, there’s pretty much nothing that will give me adequate pain relief.  Not my MS Contin, not 30mg of Oxycodone, and not 40mg of OxyContin.  The only thing that’s really worked for my chronic pain in the last couple of months has been the Methadone.  So, what to do with that knowledge?  I know that I can’t just keeping upping my dosages because it’s also upping my tolerance, and frankly, not helping take away the pain anyway.  That so totally sucks.  I never thought I’d be in this position, where pain meds didn’t work on me.  Okay, yeah, 80mg of OxyContin would still probably work, but I’m not going there.  Anyway, what I was getting at when I started this entry was that I’m still pissed off about the “drug vacation” folks, but I think I’m going to try to wean off all of my opioids for a while, at least until I’m sure the Methadone has completely left my body.  I’m thinking of trying to wean off everything - okay, everything means long-acting pain med & short-acting breakthrough med, so it’s not like it really qualifies as “everything” in general terms.  I think on my next visit to the doctor, I want to get back on Lyrica, and Lyrica only.

I say that I want to wean, but right now just sitting here, I’m fidgety with pain.  My elbows are aching, my legs are aching, my wrists are aching, there’s a weird numbish area on my back (I should probably get another MRI, just to see what’s going on in there), and my left knee went out when I was walking up the stairs earlier.  My body is screaming out for something to put out the pain brush fires.  I need to remind myself that those pain meds probably won’t work right now, so there’s no use using them.  My tolerance level is too high, although not abnormally high.  Perhaps with Lyrica and medical marijuana, I can keep up with it.  Alas, I haven’t even gotten the medical marijuana paperwork sent in, so it’s going to be a long time before I can use it.  At least I know that with pot, my tolerance level isn’t going to render the medication useless.

Blech, I’m tired of these posts.  Maybe I should just go to bed.  Typing hurts.

I wrote this blog entry last night, and decided to keep it hidden.  I don’t know, I guess I’m tired of always complaining.  But, that’s what my whole life feels like right now, so I’m just going to write about it.  I did go to bed after I wrote this...and stayed in bed for 15 hours, most of those, fast asleep.  I still want to be in bed, asleep, but the pets need to be fed.  I wonder how long I’d stay in bed if we didn’t have any pets.  A whole day?  Two?  Three?  It’s kind of frightening to contemplate.  This is no way to pay a mortgage, I know that.  I have been working every day, and over the weekend, a lot of what now appear to be useless hours, on an ex-co-workers’s accounts.  I sent 30+ emails out...and heard back from 3 people.  Ugh.

Monday, July 09, 2007

early afternoon

Because They Wrote & Asked Me To Put This Up - I’m Impressionable

Sunday, July 08, 2007

mid-afternoon

Sleep - It’s What’s For Dinner

Honestly, I’ve always loved my sleep, ever since I was a kid.  I’ve always enjoyed naps, although I was never one of those people who could take a ten minute nap and then feel refreshed.  My naps were always at least an hour, and I usually felt kind of crappy and drugged when I woke up, but if you’re tired, you’re tired.  Some naps are unavoidable.  But this sleeping all day thing just sucks.  It seems like such a waste of time.  I had a nap last night for a couple of hours, then went to sleep at 4am for good...and got up for good at 4p.  Sadly, I think I’m in a chronic fatigue phase of fibromyalgia.  Or, it something that happens after I’ve overdone it by either working all night or going out all day.  I always end up paying the consequences.  I miss being normal and not sleeping my life away.  However, I don’t think there’s anything technically wrong with me other than the FMS, so the only way to beat it is probably taking Provigil/Modafanil, but it’s really expensive.  Everything that works really well for me seems to be expensive, except for the Methadone.  Cheap, but with the terrible bladder side effect that made it so I couldn’t take it anymore.  Gah, I WANT TO FEEL LIKE A NORMAL EFFIN’ PERSON!!!  I can’t even function well enough to go out for FREE meals with the family.  By the way, hi family members if you’re reading.  I’m not avoiding you, I just can’t get going.  You know what it’s like when you have the flu, or when you’ve just finished having the flu and you feel kind of okay, but are just flat out exhausted?  Well, that’s what most of my days are like, which is why you haven’t seen me in a while.  It’s nothing other than plain ol’ fatigue.  Ugh, and we need to go grocery shopping tonight, which I usually enjoy, but now feel like it takes too much energy.  We could shop online, but it always seems like they’re out of the most important items we order, and it always ends up costing more than if you go to the store and pick out the stuff that’s on sale.

You know, I always feel like when I’m complaining about crappy fibromyalgia that no one really believes that’s what’s causing my problems.  Everyone has an answer - sunshine, fresh air, exercise, stop taking pain meds.  You know what would happen if I did that stuff?  I know the answer, because I’ve done it all.  Sunshine - it’s nice, that’s all.  Fresh air - always good, doesn’t fix anything.  Exercise - makes me sore for a very long time and exhausts me.  Stop taking meds - leaves me with the pain that I started out with, and doesn’t accomplish anything.  My meds aren’t responsible for my fatigue, except for the Methadone.  Methadone made me extra tired, I admit, although it was a great pain reliever.  OxyContin is more likely to give me a little boost of energy versus tiring me out.  My Enablex doesn’t give me energy or tire me out, it just helps my bladder.  MS Contin (my new pain med that’s replacing Methadone) seems kind of useless for just about everything.  Vistaril - it’s an allergy med that helps with nausea from pain meds, and supposedly potentiates them.  I’m not taking anything else, no magical drug stew.  Just MS Contin for extended pain relief every 8 hours, Oxycodone for breakthrough pain, Vistaril for nausea (and allergies, a bonus), and Enablex for my bladder.  That’s it.  I need a reflux med, but my Protonix is too expensive.  I’m going to have to mail order it from Canada because it doesn’t have a generic.

Sometimes I wish I had something worse, just so I wouldn’t be hassled about what I do with my days and what meds I’m taking.  No one questions cancer patients about their meds.  No one questions diabetics about their meds.  No one questions people with MS about their meds.  No one questions Rheumatoid Arthritis patients about their meds.  Everyone questions me about my meds.  Why is that?  Is there something about me that has ever indicated that I’m not capable of doing research on what treatments are available?  Has anyone ever said, “Oh, that Flippy, she can’t find anything online?” Does this seem fun?  And yes, I know that my brother thinks he can fix me, and maybe he can, but I can’t afford to go live with him.  I can’t afford to have him come live with me, and no one else in Nevada is trained to do what he does.  Now, there’s a dilemma.  So, for now, I’ll continue to look for treatments I can afford, which will allow me to work and maybe make enough to find other treatments.  By the way, this isn’t directed at most of you.  But, just a few days ago, several people suggested that I take a “drug vacation”, as if I don’t know exactly how I feel when I don’t have meds in me.  Not to mention, I’m still in the process of experimenting to see which medications will work best for me.  Plus, I see my doctor once a month at $95 a visit, so he with his medical school education and his continuing education in pain management, can advise me of me choices.  My brother, who has doctor in front of his name, can make treatment suggestions.  People who just think “Oh, pain medicine is dangerous.  People get addicted.” - those people don’t get to question my treatment.  Maybe if they’ve been reading the three fibromyalgia boards that I have, the quarterly Fibromyalgia Network Newsletters with all of the latest updates in treatment, and various books and articles...then, maybe they can add to the discussion.  But for people to just think taking me off pain meds will make things better - thanks, but no thanks.  I know what it feels like to not be on pain meds...like every few hours, when they wear off.  I think that living with that 24 hours a day just really wouldn’t be worth living.  I wouldn’t be able to to do anything then, except sit around and watch tv.  No work, no errands, no occasional trips out.  Just sitting home and coping with extreme generalized muscle pain.  I’d rather not.  Oh, and I just saw something on a UK fibromyalgia site that might be a fun little experiment for those of you who can’t imagine what FMS feels like…