Thursday, December 31, 2009

A time for reflection - ooh, goody! Reviewing this year, looking forward to next.

Here we are, then, on the eve. I'm home from work with a migraine, and while the head pain waxes and wanes the nausea is a constant, punctuated by the sharp shots of a sciatica flare-up. Snow is falling outside - the second real fall this December - and I won't go out for fear of falling. Ah, life.

I am sad to say that this year has been one largely defined by my health, or really, the problems therewith. Perhaps my body knows it's actually in its thirties now; maybe that's why my condition has taken such a dramatic nosedive. I cannot do what I could do a year ago. That's an odd thing to have to say - in my mind I still feel young.

Even so, I want to say that good things have happened this year. I just have to dig them out is all. They're not big and flashy. They're more the kind of thing you learn to appreciate because it's foolish to take them for granted.

For one, Jonathan and I moved. And while the move itself was difficult, overall it's been a good thing. It strengthened our relationship and gave us a more comfortable living space. It let me have a christmas tree! It's much more quiet here, which makes it easier for me to rest when I need to. And since we're now on the second floor, and in a house instead of an apartment building, I feel much safer. These things have a real impact on quality of life.

For another, I managed to get through another year at the office. It's killing me, but it's important to our survival. Is that contradictory? We need the income, and heaven knows I need the health insurance. And the fact is that the longer I'm there and the more senior and indispensable I am, the more power I'll have to negotiate if I need to, say, work part time or go on medical leave.

Then there are the dozens of micro-achievements that make daily life worth living: the blog posts that people enjoyed, my work with the Vegan Etsy team, the couple of zines I've managed to write, the Etsy sales I've made and positive feedback I've received, the train rides I've taken and blogged about. There was some pure enjoyment as well: reconnecting and spending of time with cherished friends, visiting my former homes and actually taking a real vacation for once, and just exploring the city with my baby like we do. And, you know, the eating.

It's been a hard year for many people in my life, but always there are spots of hope. One of my dearest friends became a mother this year; at this very moment she is doubtless curled in the warm glowing love of her new baby girl, just two weeks old. It's good to know that such happiness still exists in the world. Another friend has gained an ever growing acknowledgment of her craft and design skills, each day getting a little closer to fulfilling her dream. Yet others will be a rock star, a professional photographer, and a famous author any minute now, despite it all. Maybe this is what my wildly diverse group of friends and I have in common: no matter what life throws at us we just continue to strive for... whatever the hell it is that we can't live without.

So, next year? 2010, the year sci-fi movies are made of? (Where is my jet pack? Where is my hovercraft? Where is my homicidal supercomputer?) It's hard to say. As of my doctor's appointment yesterday, I am coming off of the Savella. That will be a somewhat slow and possibly sickening process, but I'm trying not to psych myself out over it. Once I'm off of it... Well, I have some real fears. I began the medication because I was rapidly approaching real disability. Unfortunately, while it helped the fibro somewhat, the side effects have made it hurt more than help. So off of it, I really just don't know where I'll stand. (Or hell, if I'll be able to stand at all, ha.)

Once I'm weaned, we may try Cymbalta, another medication in the same class. It may help, it may not, it may make things worse. There's a lot of guesswork and wait-and-see in this process. It, um, sucks. But there's nothing for it but to keep trying, because I'm not just going to go, oh, OK, well I guess I just don't function anymore. That's not really my gig, you know?

Of course I'll keep up with the chiropractic and all of the other things I do as well. I've never once believed that medication is the complete answer.

2009 was the year I got worse; maybe 2010 is the year I get better.

And I'll keep writing. There is so much that I want to write. Maybe 2010 is when I get another short story published - hopefully somewhere where someone might actually read it this time. It's almost a sure thing that I'll be having some blurb-ey, short expositive writing bits published in the Zinester's Guide to NYC, scheduled to be put out by Microcosm this coming summer. Don't want to say it's definite, because who ever knows what'll happen, but let's say it's supposed to happen, and at least for that I'm excited.

Will I make visual art? Probably. I can't help it. I just comes sometimes, though not as often as I'd like. Meh.

And, oh yes, I'll get married. I'll be Mrs. Breedlove. I'll spend a day dashing around in a big blue dress, and at the end of it I'll have a husband; I'll be a wife. It's really an intriguing concept. I'm quite interested to see how it turns out.

It will be a year, composed of 365 individual days. I intend to do my best to make the most of each one - whatever my "best" might be on each of them. Because honestly, what the hell else would I do?

Monday, December 21, 2009

A health update.

The truth is that much of the time I don't want to think about the status of my health, especially when it 's not too hot. Right now I'm totally sick of thinking about it - I feel like a broken record. Like I keep having to explain to everyone in my life that I just can't do what I normally would because of "my health." It's driving me crazy. But it doesn't seem to want to go away, so here we are.

I even had to bring it up in my review at work. I need them to understand that part of why the unreasonable workload there stresses me out is that it makes me physically ill. Like, for real. And they need to really and truly get it through their skulls that the days of 55-hour-per-week Mel are dead and gone. They can have 35 hour Mel, and occasionally even 45 hour Mel, but that's about where it's got to stop.

Today I am exhausted, swollen, in pain. I shouldn't be at work but I've used up all of my vacation/sick days for the year, so I just have to tough it out. It's not horrible; it's just not good. As it is I got in an hour and a half late, and I don't think I'm going to have a very productive day. I don't really get it - I got home on Friday and literally didn't leave the house again until this morning. Maybe that's why this is happening? I didn't move enough? But what with the giant snowstorm and severe cold, it didn't seem like a good idea to go out. It's a bit damned-if-you-do-damned-if-you-don't. I'm sore as hell... from what? Knitting? Wrapping presents?

The hives-from-showering thing seems to be getting worse. I'm getting them in weird places now: my face, my knees, the palms of my hands. I'm even doing mental relaxation exercises before I get in, to no avail. I've given up shaving altogether; it's winter anyway, and it just aggravates the situation. For a while I thought the hair loss had stopped, but it seems to be back in full force.

I really, really need to go back to the doctor. It's getting ridiculous. But I think I'm avoiding it. I don't believe he'll have anything useful to tell me. What possible answers are there? That I should stay on the Savella longer to see what happens. That I should come off the Savella and deal with the withdrawal. That I should try yet another medication with god-only-knows what side effects. That something more serious is wrong... I can't imagine any outcome that would make anything better.

So I'm avoiding it. But that's not going to help either. Because if something more serious is wrong, I need to know. And if I need to be off this medication, it should happen sooner rather than later.

Once again, I feel as if life is asking for more than I have to give. With "the holidays" and all, there's a whole new batch of things to take care of. Being me, of course I have to send presents, and of course they have to be wrapped pretty. And I want to decorate, and bake, and bla bla bla. And then there's so much writing I want to be doing. The more frequent migraines and almost constant exhaustion / brain fog are making that nearly impossible, though.

I want to believe this is temporary. I want to believe that no drastic action must be taken. How long can I go on believing it? It's like a battle of wills between my mind and my body, and I honestly don't know who's going to win.

Wednesday, November 18, 2009

So tired...

So for the third week in a row now, I've successfully managed to *not* work crazy hours. (Granted, this week is only half over, but you know what I mean.) I'm really only working 40 hours per, if you can imagine! Trouble is, I'm still effing exhausted.

It's pretty damn frustrating. I know I'm not sleeping well, which is just the most obnoxious thing ever. It just feels like such an enormous waste of time - spend hours upon hours in bed, and get up feeling just as sore and weak and tired as you did when you laid down. The docs always say, well we can give you something for that. But it's been my experience (and there's literature to back it up) that, while the drugs might make you go to sleep, and even stay asleep, there is nothing but nothing that will make you actually get good, restful, restorative sleep. So yeah, it feels a little hopeless. No one ever wants to admit that there are unsolvable problems, but I'm sorry, there really are.

Let's take today as a for-instance. I spent darn near 8 hours in bed. Got up feeling like I never went to bed in the first place. Went to the chiropractor in the morning, which thankfully alleviated some of the pain I was having at the intersection of my neck and shoulders. (You know the spot.) I had a relatively easy day at work, took a full hour of lunch, and left a mere 15 minutes past the technical end of my workday. And still, here it is not even 6:30 in the evening and all I really want to do is crawl into bed.

I had really hoped that cutting back my crazy hours would give some time back to me, my work, the things I want to be doing. And maybe whenever this phase lets go, it will. If this is, in fact, just a phase and not just the next level of my baseline. Hard to say - only time will tell on that one.

Ho hum, sigh, et cetera.

Friday, November 13, 2009

Standing up for myself? Yeah, it's this thing I do now.

So on Friday I pretty much flipped out about the hair thing. It didn't help that I felt too terrible to go to work - that doesn't exactly set the scene for calm rational thinking about my health. And really, it just seems that my body has to be fairly taxed to not even want to deal with having hair. It's upsetting.

And it got me to thinking. That I really shouldn't be killing myself over this stupid job. Not that I didn't know that before, because I did. I've known for a long time that the more stress I'm under, the less healthy I'll be, and that the job is a major source of my stress. But this is easily the most tangible evidence I've found so far that the stress is taking a real physical toll. Of course I have stress coming from elsewhere in my life: my family, maintaining a relationship, organizing a wedding, et cetera. But I must say, most of the time the job accounts for as much stress as everything else combined... and then some.

So, I did something about it. Sort of. Maybe. On Monday, after a long weekend of traveling and not feeling too great and waking up with migraine reverberations again, I decided it was time. Once I finally got into work, I found the two attorneys that I primarily work with and sort of laid it out for them. That in the past month or so, I get hives every time I shower, that my migraine episodes are becoming more frequent and more severe despite doubling my medication not long ago, and that I seem to be in the beginning stages of TMJ. (Thursday I couldn't really chew solid foods. It was awesome. That's not all that's happened; it's been a constant issue for several weeks now - just the most acute instance.) And that from everything any of my heath professionals can tell me and everything I can look up, the source of all of these problems is stress. Therefore, to the extent possible, the stress has got to stop.

This was a very difficult conversation. These women are my friends, so I feel relatively comfortable sharing these details of my health with them. Except that to face that these things are happening and making such an impact on what I'm able to do is really quite difficult. Basically, I'm having to face the fact that I am functionally sicker now than I was two years ago. This despite being on higher doses of existing medications, as well as being on an additional prescription. It makes me feel sad and scared (and somewhat inadequate, though I'm still far from it) to say to my employers, "I cannot do what I used to do." I am not inadequate, however. I just can't play superwoman anymore.

It is what it is. It's better to tell them this - to admit this - than to push myself and make myself even sicker. That will not make me any better. Getting more work done for them can't be my primary goal. I have to have something left for me, or what's the point?

Friday, November 6, 2009

Apparently I really am losing my hair from stress.

From the Mayo Clinic:

Stress and hair loss can be related.

The most common type of stress-induced hair loss is telogen effluvium. In this condition, emotional or physical stress — related to a death in the family, pregnancy, severe weight loss or surgery, for example — pushes large numbers of growing hairs into a resting phase. Within a few months, the affected hairs may fall out suddenly when simply combing or washing your hair. The hair typically grows back when the emotional or physical stress is resolved, although this can take months.

This seems to be what I am experiencing. It seems that between the physical stress of the health problems themselves, combined with the emotional stress of them and work and the wedding, is making my hair fall out. The irony being that, I gotta tell ya, having your hair fall out is pretty damn stressful! At least it's only the diffuse kind and I don't have any bald spots...

I stayed home from work today. At some point during my ten minutes of breakfast, I started to feel very weak and shaky and dizzy. It was basically all I could do to get back into bed. I thought maybe I could go in for half a day, but no. I feel better now than I did this morning, but not better enough to deal with the subway, the city, the office.

In fact, getting too dizzy to sit up again, must lay down once more... living in this body is just a laugh riot.

Tuesday, November 3, 2009

I don't want to take my pills.

I just want to get in bed like a normal person (whatever that might be) without having to worry about this chore. How often have I snuggled beneath the covers soft and warm, and even begun to drift off, only to realize I must rouse and trudge on into the kitchen to get something to drink, and then pull out all the bottles, and go through all the process and hope that tonight I don't choke on anything...

Maybe it wouldn't be so bad if it wasn't, you know, forever. If they didn't have their side-effects. If they weren't so expensive. If they weren't so likely to grow in number as the years pass. If I actually felt healthy for taking them. If they themselves didn't make me sick. If they weren't the most glaring symbol in my life: you are sick, you will always be sick, and if you don't do this every night you might not get up tomorrow morning.

The dependence makes me angry. I've tried, oh how I've tried, to get away from them. I take the fewest number possible, turn them down at every opportunity from numerous doctors. But on so many fronts now they're all that's standing between me and being functionally disabled... so I take the effing pills. Because it's the lesser of two evils, the "better" of two awful choices.

Of course, a hundred years ago society would have just let me die, or at least kept me locked in an attic somewhere. So I guess there's always a bright side.

Friday, October 23, 2009

Allergic to water?

I'm guessing probably not. So why am I getting hives every time I shower?

Well, of course at first I thought it was the soap. But I've tried a variety of soaps, all to the same effect. And the thing is, the red blotchyness is starting before any soap has even touched my body. So.

Water too hot? Doubtful. I am very, very sensitive to water. I can't take very hot showers; Jonathan thinks I'm crazy for how lukewarm I keep the water. So that one doesn't make much sense either.

My therapist keeps trying to figure out if there was some specific trauma related to showering, but we can't figure out anything. Just a general sense of vulnerability and weakness. But that's always been the case. So why would this start now, when I'm safer than I've ever been? This is the first apartment I've ever lived in where I didn't spend my entire shower "hearing" people breaking into the place.

So I don't know what's going on, but it's frustrating as hell. Tonight it's not just my arms and back as it has been for the past couple of weeks; I also have one in my ear and two on my face. Glorious. Yet another reason not to shower in the morning, I suppose...

Saturday, October 17, 2009

not stretching + stupid weather + crazywork = ouch.

So, my pain levels are starting to suck again. But I can't say that I'm surprised. Why? Well I'll tell you.

1) All of my good intentions about stretching every day sort of became just that - good intentions. Yeah, it's a good idea. A great idea. And I think it does help me. But after a long crappy work day it's just not what I want to do. I get home and I've just spent 10 or 11 or 12 hours doing things I don't want to do. So once I'm finally free, I want to do what I want to do. I want to blog, I want to cook and bake, I want to hang out with Jonathan, I want to dick around on Facebook and the PPK message boards and Etsy, whatever. I don't want to spend yet more of my day doing yet another thing that feels like a chore. I'm fully aware that this is an immature, self-defeatist attitude. In my defense, though it's somewhat wrapped up in...

2) Work being insane again/still. There's just no end in sight. It's bad enough that at this point every member of my little team has gone to the bosses either to have an earnest discussion about the totally unmanageable workload, or just flat out flipping out and on the verge of tears. They're asking us to do way, way, way too much work. We're all working overtime, and we still can't get it all done, and important things are just falling right through our fingers and it feels like shit. It's such a stressful situation to be in. The bottom line is that we need more employees and can't have them. So my minimum work day tends to be 9 to 10 hours long, and I'm pretty much always working a 6 day week. I think my next break from that is probably Thanksgiving. (Yes, that's right, the holiday that is a month and a half from now.)

So yeah. After yet another day in that workplace, it's pretty hard to convince myself that what I should be doing when I get home is anything other than what I absolutely most want to be doing to make myself happy. The irony being that this kind of work schedule and stress it pure torture on my body, making it all the more important that I do things like, uh, stretch.

3) It's October, right? Just mid October, not even late October. And yet. It is effing freezing outside! Seriously, every day this week it's been crap like, 45 feels like 40, 42 feels like 36, or yesterday was my favorite: 41 feels like 30! Oh, yeah, and of course it's been raining like every day. Now, on any given day of the year you can ask me "what's your least favorite weather?" and I'll tell you without hesitation: 40's and raining. Yeah. So we're in the middle of October, and instead of the awesome fall weather that I love, we've jumped straight to the December weather that I detest. And it's not just that it puts me in a mental funk either. A large part of my dislike is that my body HATES it. I wake up with that very special kind of headache, and I know without even going to the window what kind of day it is out there.

So that's my story. Work = ouch, weather = ouch, I am doing nothing to alleviate it because I'm a stubborn jerk, so body = ouch. Of course there's a good chance that no matter what I do my body is just going to be unhappy right now. But I should probably make more of an effort to take care of it regardless of that, right? Right.

Oh the disparities between what we know and what we do.

Alright. Tomorrow is National Chocolate Cupcake Day, but as I'm of course working tomorrow, I've got some baking to do. ;)

Saturday, October 10, 2009

I'm remembering everything! Except, you know, for this one little thing.

I recently noticed something really great: I'm remembering things! With absolutely no intention on my part, my near-obsessive need to write down every appointment and obligation in my day planner, my computer calendar, and my phone just sort of melted away. Normally when I haven't thoroughly documented where I'm supposed to be and when, I'm just, uh, not there. I remember an hour (or a day) or two later with a cry of "damnit!" and a wave of that old familiar frustration.

But lately... well, I make an obligation, and then it's just fixed in the day planner of my mind. It's the weirdest thing. I like it. I think I should still write things down, though, just in case. And after all, I do like to have a record of what I've been doing. You know, for posterity.

Now, could this all be because I finally have a more appropriate level of serotonin in my brain? I think it might.

There's just one teeny tiny problem.

I keep forgetting to take my pill! When my doc put me on the Savella and told me it had to be morning and evening, I asked if I really had to take it twice a day. Why? Because I know myself. I am B A D bad at taking morning pills. It took me years to get into the routine of taking the evening pills. Morning pills, forget about it. My mornings are too hectic. Too many variables.

Well, I did alright for the first couple of weeks, but sure enough, as soon as it was no longer a novelty, I began to forget to do it. I've forgotten at least three times in the past week or so! Now folks, this is just not cool. My body isn't particularly fond of this drug. So when I skip a pill, it's like having to go through the titration all over again. It makes me all icky feeling and blegh. The next morning, when I do remember to take one, I feel like I'm coming down with something - what with the nausea and the chills and all. Half my office is sick, and I think, "oh no, I've finally caught it!" And then I remember it's just something I've done to myself.

And so. The memory thing? +1. The forgetting the pills thing? Well, the hilarious irony doesn't really make up for screwing with my body chemistry badly enough to make me ill, now does it. So basically I've just got to stop being such a dork about it and take that damn morning pill.

Ho hum. Self-discipline has never been my strong suit.

Sunday, September 27, 2009

About that drug interaction thing.

So... remember how my doctor prescribed me both Savella and Ultracet? And remember how after looking it up I was all, nuh uh, no way that doesn't make sense? And how when I questioned him on it he was all, oh no really it's fine? And how when he said that I was all, uh, what are you talking about that's crazy I'm still not taking it?

Well. You're gonna love this.

Now, let's back up just a lil' bit. When I started on the Savella, I didn't have a prescription for it. Why? Because I needed to do a titration, gradually easing up to my full dose. For this, the drug company that makes Savella is kind enough (ha ha) to provide docs with sample packs. So after the visit where he prescribed both drugs, I filled an Rx of Ultracet, but *not* of Savella.

OK. So fast forward one month. I've been taking the Savella, have figured out I should NOT also be taking the Ultracet (and subsequently have not taken a single pill; still have the entirel bottle of SIXTY sitting in my nightstand drawer), and have had the second visit to the doc wherein I question him and get confusing answers. He has now written me an actually scrip for Savella so that I can continue taking it, because it seems to be working for me. I head to the drugstore.

Well, you know, drugstores do this thing, right? For people like me, who take lots of different medications. They check for drug interactions. And wouldn't you know? They see that they've already filled me up this bottle of 60 Ultracet, and then here I am waltzing in asking for Savella. RED ALERT! RED ALERT! MAJOR DRUG INTERACTION! Basically they tell me that unless they speak with my doc (or, given that of course it's Saturday, because when the hell else do I have time to go to the drugstore? at least the on-call guy) there is no way on god's green earth that they are giving me these pills.

How did I feel at that moment? Well. Unlike the SNAFU with my birth control pills the other month, where my rage was split between Walgreens and my health insurance company, I felt (feel) that this particular event sits squarely on the shoulders of one person. And that person is my doctor! Not only did he tell me to take these drugs together. But he continued to tell me it was alright after I questioned him for a good five minutes on it, explaining to him everything I'd found to the contrary! And fine, OK, the internets is not always the most valid source. But I think this little drugstore experience is proof enough that I was right and he was wrong. And fer serious, I don't want that to ever be the case between me and my doc when it comes to the medication he's prescribing me! It is, to say the least, unnerving.

You'll want to know how it worked out, eh? Well, it goes like this. At the Walgreens pharmacy, you basically have two kinds of people. There are the "pharmacy techs" who work the counter and essentially read the script. So when the kid I was talking to saw the interaction problem on his computer screen, the little light blinked on in his head, and he said "Oh there's a drug interaction we can't fill the prescription until we speak with your doctor." I explained to him that I'd figured it out for myself, that I hadn't taken even a single pill of the Ultracet, and that anyway clearly my doc wasn't in as it was Saturday. I got back: "There's a drug interaction we can't fill the prescription until we speak with your doctor." I asked if I could just have four pills to get me through till Monday, because if I stopped taking them suddenly it would make me sick. I got back: "There's a drug interaction we can't fill the prescription until we speak with your doctor." Ahh, corporations.

Don't get me wrong. He was a nice kid, and I'm sure he would have liked to help me. But assuming he had the mental ability to find a way to help me, company policy had done everything in its power to keep him from doing so.

Luckily, there is a second type of employee at the Walgreens pharmacy: actual pharmacists. When they choose to, they can think and make judgment calls. Front counter robot man started trying to get an on-call doctor on the phone, but by that time the pharmacist on staff was already on hold doing the exact same thing. She finally got one of the sort of operator people on the line and left a message, which was a bit of a trial - clearly these folks are used to taking restaurant reservations or something, because she had to say "serious drug interaction" about six times.

When she was done on the phone I sort of flagged her down. I told her what I'd told the kid at the counter, as he clearly had not done so: that I had figured out the problem for myself and hadn't taken any of the Ultracet. Her eyes sort of brightened. "You haven't taken any of it?" She filled the prescription.

She told me in no uncertain terms that I was NOT to take ANY of the Ultracet EVER while still taking the Savella. She even wrote it on on the bag: DO NOT TAKE WITH TRAMADOL!

So people, if you're reading this and have been taking these drugs together and having nasty side effects, please please please call your doctor right now. This is nothing to mess around with. This can cause Serotonin Syndrome, which always makes you quite ill and in its most severe instances can actually kill you. Medications are serious stuff and should always be approached carefully. Doctors, clearly, do NOT always know what they're doing. They have drug representatives shoving things down their throats, and in turn they shove things down ours. There is so much on the market these days - I imagine that even for the most conciencious docs it's very difficult to keep up with, and most of us real sickies have more than one doc anyway. Which is precisely why drug stores check for interactions in the first place.

Take care. And always look up your medications before you take them.

Hearts.

Sunday, September 20, 2009

How am I doing on Savella? An update.

It was pointed out to me that I left y'all hanging as to how it's going now that I've reached the full 100mg dose of Savella. I've been on it full fledged for almost two weeks now, and I seem to be doing... pretty well. The terrible fatigue I was having seems to have petered out, despite the fact that I working like a madwoman. In fact, yesterday after (9 hours of) work I went out! Like, into the city, with people, to be social! Can you believe it? I kind of can't.

As far as pain goes, well, I'm not running any marathons or anything. I'm not a whole new person. Last weekend I was having some pretty terrible sciatica - possibly backlash from having stretched for many days in a row like a good little girl and then abruptly stopping the stretching because work overwhelmed me? Hard to say. I actually didn't leave the house the whole weekend, because that particular type of pain makes walking, well, a real pain. :P BUT. I seem to be back to a manageable baseline, which is always and forever the goal. I have been back to work for three weeks now and haven't had to call in, have barely even been late. Is that because of the Savella? Who knows. Maybe. It's not making things worse, though, which is a relief, and it might be helping.

I'm actually sort of excited about something that I noticed happening on Saturday. I woke up (early - about 8 - that's been happening lately) and wanted to get up and do things. I cooked an apple cinnamon oatmeal breakfast from scratch. Simple but very yummy. Then I spent a few hours blogging. Then I dragged Jonathan into the city, and kept him out all day: we checked my P.O. box on 14th street, had lunch and mid-day dessert in Brooklyn, stopped by Union Square, and went to Bed Bath and Beyond and got a crock pot which I'm super excited about! But really. We were out all day. That's something we haven't been able to do in quite a while; a huge change for me, and a change for the better in a big way. And I can't help but feel that it has something to do with having a more appropriate level of serotonin in my brain...

I have some updates for you about taking Savella (milnacipran) and Ultracet (tramadol) together, but that can wait for a minute. Suffice it for now to say, please don't do it!

Hearts.

Saturday, September 19, 2009

Umm... OK... Umm...

Alright. So back in mid August, my doc put me on Savella. As we know, Savella is an SNRI - Serotonin and Norepinephrine reuptake inhibitor. During the same visit he prescribed a drug called Ultracet for pain. I'd not heard of it before. I did not start taking it immediately, because I never start two drugs at one time: if something is messing with me, I want to know which one it is.

Well, a few weeks went by, and I got curious about the Ultracet. Now, before I take anything these days I generally look it up on tha internets. Well, I looked up good ol' Ultracet and what did I find?

GENERIC NAME: tramadol and acetaminophen

BRAND NAME: Ultracet

DRUG CLASS AND MECHANISM: Ultracet is a combination of two drugs, tramadol (Ultram) and acetaminophen (Tylenol), that is used to relieve moderate, acute pain such as pain following dental or surgical procedures. Tramadol and acetaminophen each relieve pain, but they do so by different mechanisms. Tramadol achieves pain relief in two ways. It binds to the ยต-opioid receptor on nerves (the same mechanism that is responsible for the effectives of narcotics, such as morphine), and it also inhibits the reuptake of serotonin and norepinephrine by nerves. This inhibition may lead to reduced transmission of pain signals through the spinal cord to the brain. Acetaminophen achieves pain relief in the spinal cord and brain by increasing the threshold to pain, that is, by increasing the strength of the painful stimulus that is necessary in order to give rise to the sensation of pain. It does this by inhibiting an enzyme that makes prostaglandins. Ultracet was approved by the FDA in 2001.

Mmm. OK. Color me concerned. So explain to me exactly how it is that it's OK for me to be taking this with Savella? It's in the same drug class! The tiniest amount of research into these drugs will tell you that you have to be careful to avoid what's called Serotonin Syndrome - wherein you effectively achieve overkill and end up with too much serotonin, making you quite ill and in rare instances causing death. Well, a little more poking showed that somebody (or somebodies) doesn't think it's OK at all to be taking these two drugs together.

tramadol ⇔ milnacipran

Major Drug Interaction

Applies to: Ultram (tramadol) and Savella (milnacipran)
GENERALLY AVOID: Due to its serotonergic activity, coadministration of tramadol with serotonin-enhancing drugs such as SSRIs, SNRIs, nefazodone, trazodone, and mirtazapine may potentiate the risk of serotonin syndrome, which is a rare but serious and potentially fatal condition thought to result from hyperstimulation of brainstem 5-HT1A and 2A receptors. Symptoms of the serotonin syndrome may include mental status changes such as irritability, altered consciousness, confusion, hallucinations, and coma; autonomic dysfunction such as tachycardia, hyperthermia, diaphoresis, shivering, blood pressure lability, and mydriasis; neuromuscular abnormalities such as hyperreflexia, myoclonus, tremor, rigidity, and ataxia; and gastrointestinal symptoms such as abdominal cramping, nausea, vomiting, and diarrhea. Patients receiving tramadol with serotonin-enhancing drugs may also have an increased risk of seizures due to additive epileptogenic effects of these agents. MANAGEMENT: In general, the use of tramadol in combination with highly serotonergic agents should be avoided if possible, or otherwise approached with caution if potential benefit is deemed to outweigh the risk. Patients should be closely monitored for symptoms of the serotonin syndrome during treatment. Particular caution is advised when increasing the dosages of these agents. The potential risk for serotonin syndrome should be considered even when administering serotonergic agents sequentially, as some agents may demonstrate a prolonged elimination half-life.

Eyeah. OK, so in the span of three minutes my doc prescribed me two drugs that I'm clearly not supposed to be taking together, and told me to take both twice a day! This, to say the least, makes me uncomfortable. And given how slowly I had to ease onto a full dose of the Savella (and that even that made me ill every time I went up a few mg's), I can't imagine how sick it would make me to just start popping these pain pills. I've found several boards with many people discussing how taking these two drugs together made them ill enough to miss work, with all the symptoms I'm familiar with - nausea, dizziness, shivers...

Well, I saw my doc this Thursday for a follow-up on the Savella. I told him what my experiences have been with it. And then I mentioned what is clearly this drug interaction problem.

And he said that it's fine! That there's really no problem with taking both of them! What? I'm sorry but that just doesn't make any sense. On this drug I'm not even supposed to take herbal supplements that affect my serotonin level, and here he's saying that a prescription drug that does so is just peachy? I told him it makes me uncomfortable to take it and asked if there's anything else he can give me for pain, but we've basically run out of things that aren't narcotics or anti-inflammatories that destroy my stomach.

So, yeah, I'm frustrated, and confused, and my faith in my doc has slipped a further notch. Kinda sucks. A lot.

Any words of wisdom would be appreciated.

Sunday, September 13, 2009

A marathon, not a sprint.

It's been a long week. When I went back to work after a short hiatus, I went with a conviction that I would work a normal, 7 hour work day (9 to 5 minus an hour lunch). Well, two hours into my first day back I could see that doing such a thing would be far more stressful than just working a bit extra each day, getting a little more done, and having less to come into each morning. So I (mentally) capped it at 9 hours - of actual work, that is.

Well, I've mostly stuck to that. It's largely been without a lunch of any sort, which is fine with me because my appetite has been funny, and Midtown Manhattan is the most boring place ever anyway. Plus it makes the day shorter overall. Friday was a ten hour day - just wanted to wrap things up so I could not worry about them over the weekend, you know?

The main problem with working this way is that it takes such a bite from my life. I get home at six, seven, eight with nothing left. But I still have to deal with the aches and pains of the day, with figuring out what to do for dinner, with the rest of, well, life. And still, the temptation is there - because I'm an effing workaholic - to work even more.

So I have to keep reminding myself that it's a marathon, not a sprint. I actually can't get to the end of it. I could work 12 hours a day for a month, and I sure would land myself in bed for a week, but I wouldn't get to the bottom of the pile on my desk. Because there is no bottom. It's an endless stream. Like dust - no matter what I do there will always be more.

I don't know why this is such a hard thing for me to absorb. I know I'm not alone - many of us have this disease of "it must be done NOW!" And we would all do well to get the hell over it. Anyone who wants to tell me that my 45 hour work week isn't good enough can bite me. I produce plenty of work product in 45 hours, and I'm quite good at my job: these are the facts I must remember.

Still. Am I working this weekend? Yes, yes I am. But from home, and only a little...

Friday, September 4, 2009

Adjusting to Savella... well, hopefully I will.

I've been on this new medication for almost two full weeks now. Based on the setup of the titration pack, I should have been up to 100 mg after the first week. To that I say, hell no. I'm sensitive to new drugs, particularly to those that act on neurotransmitters. (For those of you just joining in, Savella is an SNRI.) My doc gave me two packs, to get me through a month, and I'm using them as gradually as I can calculate. Here's my schedule:

Day 1: one 12.5 mg pill in the evening
Days 2 and 3: 12.5 mg pills morning and evening
Days 4 through 6: 12.5 mg pill morning, 25 mg pill evening
Days 7 through 9: 25 mg pills morning and evening
Days 10 through 14: 25 mg pill morning, 50 mg pill evening
Days 15 and 16: 37.5 mgs in morning, 50 mg pill in evening
then to 50/50, which should be the top dosage.

A little crazy you say? Well maybe. But I'll tell you, if I was doing it any other way I don't know that I'd still be functioning. As it is I'm feeling the drug acutely. How do I know it's the pills and not just my normal crap? Well, because this isn't my first trip down the neurotransmitter brick road. The hot-but-cold, the crawling scalp, the I need to close my eyes RIGHT NOW fatigue - I know these feelings. They appeared the day after my first dose, and they've increased with each increased dose but then subsided, like a tide. So while I'm confident of their provenance, I'm also hopeful that my body will adjust - that they are not a permanent feature of my heavily medicated life.

I'm currently on day 12 - for the past two nights I've taken a full fledged pill. And oh my. Last night after work and then therapy, I fell asleep at 10pm on the couch. There was no more awake to be had. Today, my office closed early, and my god was I thrilled. Sweet relief for my aching brain. I've been home for a bit over an hour, and bed is calling my name for a late afternoon nap.

I knew that this would be a difficult adjustment. And really it hasn't been as bad as it could be. I'm anxious of what a full 100 mg dose will bring, but I can only hope that my slow approach will cushion the blow. I keep trying to remind myself that these side effects are still nowhere as debilitating as the pain that keeps me tethered to bed, and that this is all for the greater (long term) good. So here's hoping it does some.

Wednesday, September 2, 2009

Back to work OMG.

So, I started back to work on Monday. And it's been freakin' insane. I still have 70 emails in my inbox that I haven't gotten to look at, because all day long for the past three days all I've done (for nine hours each of those days, mind you) is put out the immediate fires. It's completely exhausting. But the surprising part is, it's alright.

I was extremely nervous about going back - to the extent that on Sunday night I had a few little breakouts of hives. But there doesn't seem to be any resentment that I took the time. Everyone just seems thrilled to have me back... and more than happy to pile on the work.

I had planned to only work a standard workday, which at my firm is a typical 9 to 5 minus an hour lunch. But a couple of hours into Monday it was obvious that that wasn't going to work. So I'm not jumping back into my ten to eleven hours, but I am capping it at nine. So far I haven't had to butt heads about it, thankfully. Stress-inducingly enough, there's a small chance that one of my cases might go to trial next week. Keep your fingers crossed that everyone settles - I do *not* have it in me to keep a trial schedule right now.

So yeah, I'm totally exhausted. Monday and today involved evening napping. But the part I'm excited about is that I'm getting through the days, and I feel alright! I don't feel fabulous or anything, but it also doesn't feel like I'm pushing on the verge of breaking, like it did before I took the break. I'm hoping that maybe tomorrow or Friday can be semi-normal, instead of an endless stream of emergencies. That's probably just a pipe dream, but you can't keep a girl from wishing. Either way, a three day weekend waits at the other end, and I'm through the better part of my first week back to work.

Saturday, August 29, 2009

Improving, slowly.

Slowly but surely? Maybe. On Thursday I had a massage, which was great. We may have worked a bit too deeply on some serious knots that hang out beneath the edges of my shoulder blades, as I was a bit sore on Friday. But all in all I think it really helped. I've found a massage therapist who really gets me. That relationship is all-important with all treaters - that when you talk, they listen and understand what you're saying, whether it's about your health or your worldview.

After the massage, it was the first time this week that I actually felt at home and alright in my body. Not that I felt fabulous or anything. But I'd been really nervous about whether or not I could even handle being in the city, and there I was walking (slowly) across town doing fine. I had an appointment with my therapist - my psychotherapist, that is - and I shared with her my concerns about being on two drugs that inhibit norepinephrine reuptake, among other things. She never has a whole lot of input, unless something really dramatic is going on. She draws me out with very few words and before I know it I'm going on and on about things I didn't even know were bothering me. That's because she's good.

Friday I had to run many errands, but fortunately Jonathan was off of work so he accompanied me. I did fine, just got very tired. I started off with a visit to my chiropractor, which helped of course. For reasons unknown my neck was unusually tight and we had trouble getting it adjusted, but we did get some release out of it. Maybe my stretching will help and we'll do better next week. In the afternoon I took a nap - I couldn't help it. Hours in the city left me completely exhausted. But I made myself get up, lest I sleep for too long and not be able to sleep at bedtime. In the evening Jonathan and I took a nice walk, even if it was in the rain, and then I stretched for a good 45 minutes. It's probably the best day I've had yet.

Today, it's still early so I'm not sure yet. The changing weather never helps, and I'm feeling a variety of trembles and headaches that could be the new medication or could be something else. I'm a bit achy, but nothing too serious I don't think. But any way about it, it's significantly better than how the week began, laying in bed writing in pain.

Here's hoping that my hard work pays off, and that the upward trend continues.

Thursday, August 27, 2009

Naturally I was overreacting.

We've chatted some. He's alright. This is just hard on him. We've had quite a difficult year, when it comes down to it. It's been one thing after another. And him being a person that's never really struggled with health problems, my worse times are hard for him to understand.

I do my best to give him as much information as possible, but the truth is that I'm still learning to speak his language. I can talk for two hours, and I won't get through to him nearly as much as one good internet link. I guess maybe it's harder for him to hear it from me, because it adds such an emotional element - he sees me in pain and just wants to make it better, and of course he can't, and then he just gets too frustrated to cope. But I think we'll be alright, as long as we both keep trying. We'll learn to deal with this.

The good, the bad, the ugly.

Or maybe just the good and the ugly.

Last night Jonathan and I got out for a nice walk. It was great - I was stircrazy from being stuck in the house all day. It felt so good to be able to move more than a few steps; we walked pretty far with minimal pain on my part. It was a pleasant evening, and we discussed the possibility of moving to New Orleans in a couple of years. A very light rain was falling, keeping us cool. We got home and I stretched for a good half hour or so. It's the first time I've been able to stretch this week because of the abdominal cramps I've been having, so I was really satisfied and felt like I was finally making progress.

Later, he wanted to go out for the third cigarette of the evening. I hate it when he goes out to smoke, for several reasons. 1) I hate that he smokes. 2) I think he smokes way more than he needs to for whatever addiction he may have. 3) I always think something terrible is going to happen to him when he's out there, like he's going to get hit by a car or shot or something. This third one is pretty irrational, but I've had a life that's taught me that crazy nonsensical things can happen at any time and a brain chemistry that just fuels the fire. So I can't help thinking it, but I can usually keep my mouth shut and keep it from bothering me too much.

Well, right now I've just started a drug that's further addling that brain chemistry. So when at midnight he went to leave me yet again, I flipped out. At first he thought I was just giving him hell, but when I started crying he figured it out. He got real frustrated. Keep a man from his cigarette for reasons he doesn't understand, and he's bound to. So I tried to explain it to him as best I could.

And then I made my big mistake. I told him about the hallucinations.

They're just small ones. I've been having them for approximately forever, so to me they're just not that big a deal. I know they're not real. I know they're just a product of this wonky brain chemistry. It's only even notable because they've been gone for several years, and now with this new drug they're back. But it's really not surprising.

I just see little things, or hear little things. What do I see? Animals, mostly. Or bugs. A lot of cats. When I was young, late teens, they were much more elaborate and vivid, and I could look right at them and they didn't go away. Even then though I knew they weren't real. I hear fairly normal sounds really - phones ringing or the computer making a computer noise, only the phone isn't ringing and the computer's closed. Every now and then I hear someone speak, but I could count those instances on my fingers, and we're talking over a span of almost fifteen years. I know what you're thinking, but I never did drugs, not the fun kind. Nope, not even once. Apparently I didn't need to; my brain did these things on its own. Of course there were years of chronic insomnia, which I think helped me along. That by itself can make you hallucinate, and I had real chemical problems on top of it.

So anyway, I told him about the one small visual and multiple small auditory hallucinations that I'd had throughout Tuesday and Wednesday. And he sort of freaked out. I don't exactly understand why that upsets him more than the days when I can't really walk, or when I can't bathe myself. Maybe he thinks I'm really crazy. I feel like he hates me or is disgusted with me. Being the me that I am, this morning I'm half convinced that he's going to postpone the wedding or call it off or leave me or throw me out or god knows what.

This morning after he went to work I emailed him some info on how common it is for anti-depressants to cause hallucination. I slept terribly, which I want to blame on taking two drugs that inhibit norepinephrine reuptake, but I have to remember that this happened several times last week too - before I started the new pill.

I can't believe that Monday I have to go back to my superintense, high pressure job, and try to deal with all of this and that at the same time. I feel like trying to do it all is going to make me have a nervous breakdown. And of course, it wouldn't be the first time.

Wednesday, August 26, 2009

Addendum to previous post re: Serzone

Not that it matters so much since the drug isn't on the market anymore, but then come to think of it the generic (nefazodone) might be. And anyway, I just believe it's important to be as educated as possible on this kind of topic.

Serzone is not an SSRI. Instead it is a Serotonin antagonist. This isn't what it sounds like. Basically neurotransmitters are usually sort of cycled through the brain - they're spit out into there, and then they're picked back up. SSRIs, as the name implies, are "reuptake inhibitors" - they stop the brain from picking the serotonin back up out of the brain so quickly. Serotonin antagonists also do this, but at different receptors or in a different way. So, same overall effect but different mechanism. And, as it seems, different side effects. Other serotonin antagonists include trazodone and its brand name, Desyrel.

Regarding my other current medication, Wellbutrin, seems that it is a norepinephrine and dopamine reuptake inhibitor. I'm not sure of the wisdom of being on two drugs that both inhibit the reuptake of norepinephrine, particularly since I've been known to be prone to panic attacks. One doctor thought it'd be just fine, the other thought it'd probably be fine. So... we'll see, I guess? If it seems like I'm getting way more panicky, someone mention it maybe?

Have I mentioned that I hate being on drugs? Yeah. Bigtime.

Reassuring? Yeahno.

So I'm having some worries about the new drug I'm on, and it made me wonder about one of the drugs I used to be on years ago, Serzone. It was, I believe, an SSRI. So I googled it, and one of the first hits I got was this article:

May 20, 2004

Bristol-Myers Squibb announced today that it is pulling its antidepressant Serzone (nefazodone) from the U.S. market. The controversial antidepressant has already been banned from sale in many countries because of links to cases of liver failure and injury, and at least 20 deaths. The company reportedly notified wholesalers that distribution of Serzone would end June 14. They insist that the medication is being pulled because of declining sales, rather than concerns about its safety.

Several lawsuits are pending in U.S. courts against both Bristol-Myers Squibb and the U.S. Food and Drug Administration (FDA). Nefazodone will remain available as a generic medication, and some attorneys report that they will continue their suits against the FDA until the drug is banned from the market entirely.

While liver failure is not a common side effect of the medication, there is no way to predict which patients will suffer this potentially-fatal side effect. This unpredictability is what led Canada to ban the medication last year. Nefazadone appears to be the only antidepressant currently on the market that can cause liver failure.

Uh, yeah. I took that stuff for like three and a half years! Ugh. See, I know how ineffective the FDA is, and things like this are why it's so damn scary.

So now I'm trying this new drug, and so far I'm taking 25mg split into two doses. I'm supposed to get up to 100mg per day, but even at the 25mg it's making me sick. I know it's the drug that's doing it, because I remember these feelings. The hot chills, the crawling scalp, the particular kind of headache. These effects never went away with the Serzone, or with the Paxil before it. It's why I was skeptical when I found out this drug had to be taken in the evening and in the morning. If I take it just before I go to bed, I sleep through the worst. I don't know about feeling like this and having to go to work. Hell, it's keeping me in the house today and all I wanted to do was go to the stationery store.

Here's hoping my body adjusts and the effects wear off...

Tuesday, August 25, 2009

Admitting defeat or just finding the appropriate tools?

I'll just say it: a lot of the time, showering is difficult. So difficult, in fact, that I just don't do it. When my choice is between dealing with the pain and frustration that is bathing or going without the evening shower, I have frequently chosen the latter.

This confuses people who have spent their whole lives bathing every day. They say, don't you feel gross and awful? But they just don't understand what it's like. It hurts to stand there. On really bad days, it hurts to have the water hit my skin. And when I feel weak, it's just scary - I'm afraid I'll fall and really injure myself. It's just not worth it.

Now you're thinking, can't you just take a bath? Well no. Getting all the way down into a tub is pretty difficult when you're in a lot of pain. Not nearly as difficult, though, as getting up out of one. It's also a super hard surface to be sitting on, and I'm pretty leggy, so I usually don't fit too well in apartment-sized bathtubs. It's uncomfortable, which is really not what you're looking for when you're already in pain. So.

Recently this reached a point where something had to be done. Bathing is, all and all, pretty important. So Jonathan and I decided that we'd go ahead and get me something to sit on. I've been avoiding this for years. Why? I don't know exactly. Probably because it's like admitting that I'm sick enough to need it. I think this is a remnant of the household I grew up in. We took this really stupid approach to illness, and other unpleasant things: something like, if we pretend it's not there, maybe it'll go away? Brilliant, I know. So for years it's been hard to shower, and for years I've just let it be hard. But it became too hard, and I couldn't ignore it any more.

So shortly before our trip to New Orleans, Jon went out on a mission. He first went to the drugstore and found a stool made by HoMedics that cost $99 and didn't fit in our tub anyway. He then proceeded to one of the neighborhood "dollar stores" (in case you didn't know, Queens is the dollar store mecca) and found one for $4.99 that fit the bill perfectly. Tall enough that I can get onto it, low and sturdy enough to be safe, and the right width for the tub. It works beautifully.

So now I can shower. It sounds like a small thing, until you've been through this. When you lose the ability to do these simple things: bathe, feed yourself, put on clothes - that's when you start to feel that life is just way too hard to live. Sometimes it's a matter of waiting for a flare to end or asking for help. But sometimes there are simple solutions, if you're willing to accept them.

If anybody's got an answer for getting the dishes done with no dishwasher when your hands won't work, I'm all ears. :)

Monday, August 24, 2009

Dr. Feelgood.

Ten little monkeys, jumping on the bed. One fell off and bumped his head. Went to the doctor and guess what he said? That's what you get for jumping on the bed!

That's sort of what I feel like right now. Not that my doc wasn't sympathetic to the pain that I'm in. But he was kind of like, well what did you expect? And I suppose he's right. As disconcerting as these things are, I really can't be surprised when they happen, can I?

Granted, in his office I was more overwrought than seemed warranted by the situation. This is because of the acute pain I've been in since Saturday night. It's somewhat abated now, back to something duller and more bearable. But it's left me weak and tired. It's also been really hard to eat anything, which isn't helping my emotional stability.

I went through it all with the doc, and he came to the same conclusions that I'd already reached: that I'm in a prolonged flare up, that life is no longer manageable in my present state, and that we must do something. And what is that something? Well, we're going to try the Savella. He gave me sample packs that are set up in a two week titration - that is, I'll start on two daily doses of 12.5 mg and end up on 2 doses of 50mg. He also gave me a prescription for a pain medication, one that I don't remember having tried before. I haven't filled it yet, because I never start two new medications at once. If something's going to make me ill I want to know which one it is.

So here's hoping this does some good. As soon as I'm able (that is, as soon as this acute flare is finished having its way with me), I'm going to start to build some kind of stretching regimen. It's not new territory for me; I just haven't done it in a while. Right now though I'm fairly well tethered to bed, and there's not much bending going on since the pain is focused in my abdomen.

Grrr. Body. I suppose I have to have one. Sometimes I wonder if it's more trouble than it's worth? Hmm, wonder what my other options are. :P

Sunday, August 23, 2009

For the first time.

It probably shouldn't be the first time I've done it. And I guess, in a way, when I left the law firm job for six months last spring/summer my physical health was part of why. But then I spent that time working more physically demanding jobs, so it wasn't a very good approach.

Anyway.

For the first time, I've actually taken some real time off of work so try to get my health back to a more workable place. What is "real time"? Only two weeks, actually. But for me, someone who sort of freaks out when I have to go in late or leave early or, god forbid, just call out for the day, it's a pretty big deal.

Now, if there are any fibromyalgics in the crowd, they may be saying to themselves is this girl kidding me? She works full time and calls herself sick? This is total crap; I'm out. To those people, I say: first of all, yes, I work full time. And it's really, really hard. I take several prescription medications and am under regular chiropractic care in order to be able to do so. And even then sometimes there are days that I barely get through, and days that I don't get through or don't even make it to. (At this point I should note that I spend a fair amount of mental energy defending myself from imagined attacks. Symptom common among sufferers of "invisible" illnesses and/or people whose parents did not acknowledge their sicknesses and injuries in childhood? You tell me.)

Back to my point. I had already planned to take the first week, for the trip to New Orleans. This second week, though, was an impromptu decision. I came to it the week before last, on Monday specifically. It had taken me extra long to get up and get dressed and get to work; I was an hour late. Because, you know, I was in so much pain that walking was pretty hard. And within 45 minutes of arriving, I realized I shouldn't have gone at all. At that point though staying was as easy as getting back home. The pain I was in didn't allow me to rest in bed (laying down was excruciating). And the travel home, either by subway or by car, was a more daunting task than I could stomach the thought of. So I stayed.

It was, as they say, the final straw. For weeks - six of them? seven? eight? - I'd been getting progressively worse. More bad days, closer and closer together, and of a greater intensity. I've gone through so many bouts of weeks or months on end of heightened exhaustion, increased levels of general pain, or localized flare ups. This has been something different. I'm still not sure that I know what's happening. But by that Monday I knew unequivocally that if I did not take action, it would keep getting worse.

So I sat down with the two attorneys I do most of my work for. I've gotten myself into a very fortunate position in that I work for two compassionate people that value my "contributions to the team". They're also just cool, and it helps that we're all about the same age. (OK, fine, I'm three years older than both of them. Whatever. They're overachievers and I'm a late bloomer. A subject for another day.) They see what I do to myself, pushing too hard and making myself sick, and then having to backpedal, reel it all back in. And basically they'd rather me take a little time now to get back to a good place than keep pushing it and run into who knows what in another month or two.

So it was decided. It was immensely difficult for me to admit not only to myself, but to people that I work with and for, that things had actually gotten bad enough to warrant needing so much time off. One of my afflictions - one of the reasons that I'll probably be in psychotherapy for ever and ever - is that, whenever I try to explain my condition to anyone, I feel like I'm lying. Or at the very least exaggerating. (This could also be where some of the defensiveness comes from - I'm trying to convince myself. You'd think the pain would do the trick?)

Well, here I am, post week one, about to enter week two. The week where I'm home, and just not going to work. And I'm scared, because I'm not getting any better. Today I'm in such severe abdominal pain that I've barely left my bed. I'm not sure of the provenance of what's happening: whether it's the pain of my lower back inflaming the nerves that innervate my digestive system, or whether it's an IBS flare (I've been having a lot of those lately), or whether the severe craps from my three-day-early period have everything in the neighborhood in an uproar. It could be any combination of these. The end result is the same: I can't stand up straight, and when I try to walk I look like I'm doing my best impression of an octogenarian. Actually, our landlady just turned 80 and she gets around a good bit better than I do some days.

I'm frustrated, and I'm scared. I'm worried that I may not be able to go back next week. How do I go there when I can't walk? I shouldn't. I know I shouldn't. This flare is out of control, and I can't seem to reel it back in. I have great plans for stretching and eating better and maybe starting yoga again. How do I enact them when I can barely get out of fetal position? I have an appointment with the doc tomorrow, and maybe a new pill will help, but I know better than to expect miracles. I also know better than to think it won't come with a price.

Thursday, August 20, 2009

You get on my nerves! A visit to the neurologist.

So Wednesday I had a visit with my mom's neurologist. The thought was that, since he's familiar with the family's history of chronic pain, he might have some clearer insight into my problems than my other doctors have had. According to mama he's also just a really good doctor - he's helped her a good deal with the nerve pain she's had ever since her radiation treatments sixteen years ago. I actually made the appointment before my health had taken this recent turn, and was increasingly glad that I had made it as things progressed in the weeks approaching the trip to New Orleans.

Well, I had a decent talk with the good doctor. I explained to him what's happened over the past eight to nine weeks, which perhaps I haven't properly explained to you. So now I will. Doctors are always asking you to put your pain on a scale of zero to ten, zero being "no pain at all" and ten being "I can't get out of bed I'm in so much pain". Well, this is a rather hard thing to do, because at its core it's asking a person to quantify something that is essentially qualitative. But after thinking about it for eight years or so, I think I've got a grip on it.

I estimate that my everyday, know how to deal with it, it's there but I can function pain is at about a 3. Sure I get stabs of other things throughout the day, but the constant is about a 3. We can't throw headaches into this because they're a whole other ballgame; we're just talking body pain here. OK. So what seems to have happened is that, for whatever reason, I've popped up to a 4 as my baseline with much too regular bouts of 5 or 6, and isolated but frequent incidents of 7, 8, and 9. This is what we like to call "borderline debilitating". I can't live like this.

So I explained all this to the doc. We talked about my migraines, and he thinks that the 100mg of Topamax I'm on for them is fine. It's a low dosage. He doesn't think I should ever be on any more, though, because it may start to cloud my thinking, and "especially with the work I do" that wouldn't be good. Um yeah. He also thinks that if I can stretch more and get the muscles of my neck to stop being made of rock, it will help. Muscles affect nerves too. More on that in a minute.

He was surprised that I'm on as little medication as I'm on, and I explained that I don't like taking pills unless I absolutely have to. I told him that I have Flexaril for when the spasms come, and he chimed in that but of course I can't take it all the time because it would make me too fuzzy during the day. I mentioned the anti-inflammatory that I sometimes take, "But that will upset your stomach" he said. Yes, exactly. They tear the shreds out of my sensitive tummy.

I asked him if he thought I should be on any medications specifically for nerve pain, and he said no: what I need to do is stretch and get my spine loosened up. I'm having nerve pain because 1) the muscles around my vertebrae are so tight that they're compressing the spaces between the bones causing those bones to put pressure on the nerves, and 2) the muscles are tight enough to inflame the nerves all by themselves. Now, I've long thought this to be true, so it's really interesting to have it come out of the mouth of a neurologist. He believes that by stretching (and he's right, I don't) I can relieve some of it.

I asked him about this damn Lyrica drug, which my mom is on and I recently discovered is an anticonvulsant just like the Topamax. He said that yes, it might help with the pain a bit. But that it would also likely cause me to gain weight and to retain water in my feet and hands - all of which would worsen my condition. Basically he said that it's not the right drug for me, so I'm glad I asked him. Many doctors will just say, oh you want that one? Sure we'll put you on that one. This is not a good thing.

He suggested that I look into the two other drugs that have been "approved for use with Fibromyalgia". People think that they are antidepressants because they work on neurotransmitters, but luckily I've taken plenty of biology. Sure, serotonin affects mood. It also governs little things like sleep, muscle contraction, digestion, and the perception of pain. So it makes perfect sense to me that adjusting serotonin would help with dealing with Fibro.

Both of these drugs, Cymbalta and Savella, are in a new class of drug being called Serotonin and Norepinephrine Reuptake Inhibitors (NSRIs). Basically they convince your brain to keep more serotonin and norepinephrin in there than it normally would. This is similar to a class of drugs that's been around for a while called Selective Serotonin Reuptake Inhibitors (SSRIs). I've been on a drug called Wellbutrin for about five years, and all this time I've believed it to be and SSRI. I guess I never did my homework, which is quite unlike me really. It's actually in an entirely different class of drugs and works primarily on dopamine, and has little effect on my serotonin levels. So really all this time I thought I was boosting my serotonin when I wasn't. Annoying! The good news though is that I could add a low dosage of one of the NSRIs to my regimen without changing the rest, which is what I suspect we'll do.

I go see my doc next Monday. I'm nervous. I want this to get better.

Tuesday, August 18, 2009

Just pick somethin, wouldya?

Well, I made it to New Orleans. The flight wasn't too terrible. I spent parts of it trying to be distracted by my book, and parts of it trying to pretend that we were just being made to sit in a very loud and uncomfortable room while waiting for something we wanted - which is sort of true, isn't it? And then once we caught sight of the Northshore and Lake Pontchartrain I was so excited to be home that I forgot all about the previous three hours. Really it all went as easy at it could have as far as wait times, so no complaints here.

Of course, we'd been in town for exactly two hours before my mother had made me cry. But isn't that just a mother's way?

That first day, Sunday, I stayed awake for too long and tried to do too much on the four hours of sleep we'd gotten before the flight. As my reward I was awoken at 6 am on Monday by my right calf, in spasm. In the past year or so these spasms have become less forgiving: the main attack will subside, but the muscles along the bone will continue in their excitement for a couple of hours if left to their own devices, leaving me sore for a week. So basically with these things I just don't play anymore. I made poor Jonathan get out of bed and get me a drink so that I could take a flexaril. It of course left me a bit groggy all day, but at least I'm not as sore as I would have been.

This is how it's been lately - each day it's something different, some new body part erupting. I wake up and start to feel it out - what today? Sunday it was that spot between my spine and my shoulder blade, so that each time I took a breath the pain went from a dull ache to something of a stab. Monday was the leg. Each time I stood up I'd have to spend 30 seconds to a minute stretching it out before I could walk again. Today? Well today is early yet, but it's working itself up to be a neck-right shoulder-left sciatic combo. Woo! I'm hoping that once I manage to move around some it will subside a bit.

Because today we have a tasting with the caterer! And I want to be able to enjoy that. I want to be thinking about the food, not about the pain in my back. I'm a little worried about my stomach - lately it's had this attitude like, uh, you put food in me? Solid food!? And you expect me to just stand for that?? I do have some reason for hope though, because I did make it through a dinner at Juan's Flying Burrito last night without incident.

So, here's me, crossing my fingers in the hopes of a pleasant afternoon. Naturally I hope you have one too. :P

Sunday, August 16, 2009

Worried about flying.

This morning we are flying to New Orleans. Now, I'm not particularly afraid of flying. The height doesn't frighten me, and I have a good enough grasp of physics and particularly of the concept of lift that as long as we've got both wings and functioning landing gear, I'm pretty sure we'll be alright. I get anxious about other things: making it to the airport on time, getting to the right gate, having enough overhead compartment space left after all the jerks with their ridiculously large "carry-ons" that I could practically curl up inside of have hogged everything.

But what really concerns me about flying is simply this: how long I'm expected to sit in one place. Seriously? Three hours? No standing up or anything? I mean sure, maybe there's the one trip to that horrid little bathroom. But if you try to dawdle in the aisle you'll have a talking to from Nancy or Gwenda or Steve, your "friendly" flight attendant. On the bright side, I now get to travel with my man, my fiance, who lets me lean on him and doesn't care if I take off my shoes and always gives me the window seat. But still. I generally can't stay in one position for more than about three minutes. And given the very small range of motion allowed by the typical airplane seat, I run out of options pretty fast.

I try to keep myself distracted. My pain has been so varied from day to day lately, who knows where it will go today? Most of my pain medications are upsetting my stomach right now, so that doesn't seem the best route before getting on a plane (to say the least). I suppose all I can do is hope for the best, and concentrate on the payoff - that once it's over, I'll be in my city, where I can relax in air conditioning and drive around in a car (instead of riding the subway) for a whole week.

And hey, maybe there'll be a good movie.

Saturday, August 15, 2009

My first MRI.

I wrote this last weekend for my other blog, but at the moment it seems pertinent. Except now it gets an addendum. I was having an MRI because we though I had a bulging disc in my cervical spine...

* * *

It's sort of like being in the middle of an air raid siren. No, I mean inside of the actual siren - the thing that makes all that noise. What else could explain that level of sound and vibration? It's actually comforting that the quality of the sound changes every couple of minutes - from a honking kind of alarm to a jackhammering kind of noise, and so forth.

It's also a bit like being stuck inside of a Squarepusher album, which itself is stuck on one of the more noisy bits.

Honestly, though, it wasn't so bad. I was only doing the cervical spine, so my test only lasted for fifteen minutes. My tech was really nice, and saw that I was clearly anxious. So he let Jonathan come to the back with me, and then had him fill out a few forms so that he could come right on into the test with me.

Laying down on that plank, I sure did want to start crying (again). But they put a nice blanket over me, and a foam wedge under my knees so that it would be more comfortable to lay still. They gave me ear plugs of course. The "camera" for my neck was attached to a crazy contraption that fit sort of over my head and face, and made me feel a bit like those poor kids with headgear that you see in awful 80's teen movies. Before they slid me in, they handed me a sort of ball attached to a cord, and told me that if I needed to stop and come out, all I needed to do was squeeze that ball. It's the kind of shape that's just reassuring to hold in the hand. And of course, knowing you have a killswitch is comforting in and of itself. Then, in I went, into the tube.

And then they pulled me back out. It was a little disconcerting. But they did it to give me a mirror, one that fit onto the thing that straddled my head, so that I would not only feel Jonathan touching my legs, but would also see him. I think it made all the difference.

It was definitely a test of endurance. I am very, very sensitive to sound. It is also terribly hard for me to stay in one position for more than about two minutes, let alone fifteen. But I did a lot of slow conscious breathing - knowledge left over from my yoga days - and for the last five minutes I was counting down. I have a pretty good sense of the length of a second, because of a habit I had as a kid of literally watching clocks.

When it was over I was quite relieved - and quite stiff. My neck hurt for the rest of the day, just because I'd made it stay still for so long. But more importantly, it was over. Now, hopefully, by Tuesday I'll know what is and is not wrong with my neck.

As one of my attorneys (that I work for - I'm not suing anyone) said, let's hope it's just effed up enough to get me some physical therapy.

* * *

Well, there is no bulging disc, which I'm being urged to think of as a good thing. And yes, it's always good when there's no actual tissue damage. Problem being that what I do have is a pinched nerve due to "normal arthritic changes" in the discs. There is little to be done about this. The docs tell me really helpful things like "get a lot of rest". Which I'm trying to do. I'll elaborate on this later. Even my chiropractor doesn't have much input; all she can say is to keep on coming. Which I will.

And naturally, the insurance company won't cover any therapy. They're so, so not into chronic problems. I gotta get me a sports injury; they're all over those things.

I'm seeing my mom's neurologist this coming Wednesday while I'm in New Orleans, and I'm holding onto hope that he may have some insight that my docs here don't. Of course, he might say something really brilliant - something like, "well, you should get a lot of rest."

Friday, August 14, 2009

The what?

I've been blogging for, what, five years? And recently something's struck me. I have a blog about work, and about the NYC subway. I have one to post short stories on. I have one about the wedding, and one about being vegan. I have one dedicated to cross stitch, for chrissake. In total, I have 12 blogs, and I write weekly on another. And not one of them has to do with the condition around which my life is practically built.

And what is that? Well, I've been "sick" since I was 17. I wasn't diagnosed until I was 21, at which time they came up with the big and fancy word fibromyalgia. Super simple definition? Syndrome what causes pain in tissues that aren't bone... and some other stuff. Feel free to google it; just ignore all the hits for prescription meds.

It's not just that I don't have a dedicated blog about it though. I straight up don't write about it: not until it forces its way into my consciousness so loudly that I can't think of anything else for hours or days (or occasionally weeks) on end. But even if I do occasionally write about it, it doesn't feature. I have no tag for "fibromyalgia". I don't have one for "pain", for "muscle spasms", for "another sleepless night", for "migraines", for "side effects of prescription medication". Until about two weeks ago, I didn't even have one for "health".

Why? Because I don't like to think about it. More specifically, I like to not think about it, pretend it's not there. My illness is the basis of many of my daily habits - but, who among us thinks about the motivations behind our daily routines once those routines are in place? I would contend that the purpose of routine is so that daily life does not require constant thought.

It's true, though, that sometimes I do write about it, in blogs and elsewhere. This past winter, I went through an odd bout of localized flare-up that made it rather difficult to walk for a rather long time. It was really quite focused on my right foot and sometimes knee. So my brain was just fine, while my right leg said, "Subway? Are you effing kidding me?!" Housebound and frustrated, I pushed out a zine which I called The Plage Project. I published it through Lulu.com and then posted it on Etsy, and for months on end it met with a huge response from exactly no one.

And then, a few weeks ago and seemingly out of the blue, I received the following message through an Etsy convo:
I think it's the third photo, the one about thyroid... Actually brought a tear to my eye... I've been through that dance SO many times. it took ten years for me to get the fibro diagnosis.

And, I dunno, I just wanted to thank you for writing about it, talking about it, sharing it. It's hard, and I really admire folks with the courage to even try to explain it. Gives me a lotta hope.

I don't know if you'll care, or if it'll mean anything to get this, but I hope so. It means a lot to me that someone else gets it.
It was like being knocked down. You write zines, you throw blog posts into the world, and you sort of fantasize that someone somewhere will have this kind of response to it. It never happens. Except that sometimes it does.

Lately I've been going through a bad time again, the kind of time that reminds me, oh yeah, it really is chronic. This is something I always know as fact. I am also aware of the fact that it can get worse at any time, and may or may not ever get better. And it's pretty likely that no one will be able to tell me what's happening or when it will change. Yes, I know all of this. And yet, every time things get rough it knocks me for a loop and I get all emotional. Because no matter how much you know it, it's still hard.

So I've decided, finally, to write a blog about it. For two main reasons I suppose. The first is that I fear this complacency of mine leads me to dangerous waters. Instead of progressing, if I could even do such a thing, I am only maintaining. I ignore pains for too long, pains that might just be status quo but might also be something that need to be looked into - like my current pinched nerve situation, that I could have started treating weeks earlier had I been paying attention. I forget that just because I feel alright enough today to get up and go to work and do the things I need to, that has no bearing on tomorrow. And in fact, if I try to do too much today, chances for tomorrow being bearable grow proportionally slimmer.

The second is that - and this is going to sound wickedly pretentious - if my words could be consoling to one person, maybe they could be consoling to others. This girl who wrote to me, who I've been in some contact with now, seems to have found something really significant in what I had to say about this situation that we're both in. That is, the situation of being relatively young and dealing with the complexities of having a chronic, painful, and "invisible" illness. It's kind of like when you read Catcher in the Rye when you were in high school and you were like, hey, I'm not the only one!

Am I now comparing myself to J.D. Salinger? No not really, I swear. But you know what I'm saying. It's always better to know that you are not alone. So maybe I'll just say it. If you're in your teens or twenties or thirties, struggling to put together a livable life, and simultaneously battling chronic illness, you are not alone.

It still sucks ass though.

So let's talk about it.