Monday, September 6, 2010

I think I have decided...

that I have too many blogs. Clearly I do not keep up with this one. I am going to leave it here, because maybe there is something in it that will be useful for someone who is having similar experiences. But it's just too much to keep up with. If you enjoy my nonsense, you can keep up with me over at my everything blog, OK, all together now! You can seek out posts of interest through my tags.


Tuesday, June 29, 2010

I have measured out my life in fluid ounces...

You may be wondering why you haven't heard any more about my kidney stone troubles. As it turns out, it's actually pretty hard to write anything clever, entertaining, and insightful about an extremely uncomfortable and often painful medical condition that refuses to go the hell away. So while I do still fully intend to write down every word of my experiences, it may be a little while before it all comes out. Until then, plain old blogs for you. But look! Fancy new background! Oooh, shiny.

So, yes, I am still quite, uh, stoned. I started out with seven, and to my knowledge - well let's say this. If my stones were a week, it would be Tuesday morning. About three weeks ago I underwent a fascinating procedure called lithotripsy - literally rock crushing - for the one large stone on the left side that caused all the ruckus. It's not as bad as it sounds. They crush the rock using sound waves (ultrasound, in fact) from the outside.

It was pretty bizarre. I laid on a table that was a lot like an x-ray table, and with good reason: it is an x-ray table. But with a sort of plastic hammock for a bed, and the ultrasound wave generator underneath. The last thing I remember before succumbing to the IV anesthesia (which is way, way better than being gassed, by the way) is having water poured into the plastic hammock I was laying on. That really did happen. The older machines required the patient to actually be submersed in a tank of water, and all of the newer ones require water in one way or another. Something about focusing the sound waves. Don't ask me; I'm not a physicist.

When I woke up my gown was damp around the edges, and I felt a bit like I'd been kicked in the back by a horse. That feeling persisted and got quite a bit worse throughout the evening, and I expected to feel terrible the following day. I didn't. I was tired, for sure, and it did hurt a bit, but it really wasn't bad at all. Beginning a few days after that I went through three days of terrible pain... and then passed a fragment of stone that was 2mm x 4mm. Eureka! Something to send to the lab, and at least it was a clear answer to all that pain.

Since then, not much has happened. My stent hurts like a mother from time to time. I saw some x-rays that revealed why - that thing is over a foot long! I had no idea. Not to mention that the rest of the pieces of the stone can't get past it, so they're just wedged in my ureter, pressing all up in there waiting to get out. They'll have their chance after Friday, when the stent itself makes its grand exit.

I have quite a mixed batch of feelings about that particular event. On the one hand, I'm pretty sure it's going to be a wildly unpleasant experience and that I'll be in a good deal of pain and discomfort for several days afterward. On the other, I have high hopes that once I'm over that hump I will actually be relieved of the pain and discomfort I've been in for over a month now. I've gotten to the point where I feel like I'm going to break. And I'm talking senseless sobbing in the shower kind of I'M GOING TO BREAK. Something's gotta give, and I keep trying to find a new body but the market is just so weak these days. So I suppose stent removal it will be. Happy Fourth to me!

So, to the Gods of Urology, I send out a little prayer for a smooth procedure with no complications... and as for me, I'm keeping my fingers crossed.

Monday, May 31, 2010

Is it ever that simple?

Well, OK. I have seven kidney stones. And instead of just having them blowed up and getting on with my life, I had to go get all scary ill and spend a bunch of time in the hospital. Come on, this is me we're talking about here. Like I could just do something normal and easy? So of course I'm going to tell you all about it, but because I like to pretend I'm a writer and/or because I like to try to pull something productive out of the ridiculous situations that get created in my life, I'm going to do so in a series of installments entitled: Dear The Hospital, This Is Not a Love Song. You'll love it, I promise.

Sunday, May 23, 2010

Kidney Stones!

Spent all day yesterday in the most gutwrenching, agonizing pain I have ever experienced. And kids, I have been in some pain. When the nurses at the ER finally heard about the 6mm stone obstructing my left ureter, they actually couldn't believe how well I was taking it.

Yes, it's true: I've found a new and different way to be completely and utterly miserable. It seems that my organs have been quietly making pointy little rocks behind my back! And now the little rocks want to move around, which is not so quiet. Pure, pure evil, but not at all quiet.

I'm supposed to go do some crazy thing next week to blow up the little stone with the big pain, and then hopefully this will all be over...

Monday, May 17, 2010

Doctor 3.0: Prednisone experiment abandoned.

Well I saw the doc once again today. He... forgot that he put me on prednisone. I think he's having some kind of problem getting his nurses to transcribe his notes or something? On the one hand, I can't expect him to remember every detail of our appointments for four weeks at a time, so if the info doesn't get properly entered into my chart I can't blame him. On the other, wow, it's a little unnerving, no? If I was not the patient that I am, I could be royally screwed by that kind of dickup.


Once I reminded him that he'd started me on the prednisone, he asked me how it was going. Ha. And the truth is that it hasn't done much, if anything. (For the last couple of days maybe I've had a tiny more pep in my step, but who's to say why? It always goes up and down. I've certainly still had pain.) To which he promptly responded OK, then we'll cut it out. This surprised me, since I've only been taking it for about ten days.

But he explained that if it's not "a revelation" - and surely it is not - then it's just not worth all the nasty side effects. He also explained that this indicates that my ailments are in no way autoimmune. That makes sense: prednisone is an immunosupressent, stopping the body from attacking itself. Whatever's happening with me, it's apparently not that. Which is good - all the autoimmune stuff is super scary and degenerative, so while it would be an answer of a sort, it certainly wouldn't be a good one.

Frankly I'm happy to be off the stuff. It made me very nervous. The idea of my adrenal glands shutting down and shrinking, of my missing a pill having the effect of making me quite ill really wasn't sitting well at all. Of couse I'm also frustrated. Here's this drug that works "miracles" on the pain of so, so many people, and on me it does jack. Naturally. Well, so it goes I guess.

Next he wants to try the Cymbalta. I'm of course skeptical of this; it's in the same class as the Savella (SNIRs) which was already a try-n-fail. But he swears that they're significantly different. So hey, what the hell. I'm giving myself some time though, a couple of weeks to be off of the prednisone and then just not be on any new drug for a minute. I just need to rest, damnit. Especially before I start effing with my serotonin levels, which always makes me kinda sick.

Anyway, here's hoping.

Wednesday, May 5, 2010

An interesting article: fibro and diet.

This is an article that lists 7 "foods" to avoid - though many of them are more like food groups or additives/inclusions. None of it is news to me, but it's all good to think about.

They're never going to get me to believe that nightshade stuff though. Give up tomatoes, potatoes, and peppers? Why bother to eat?

Monday, May 3, 2010

Cholecalciferol - doesn't that just sound delish.

Now about this Vitamin D deficiency. Foolish doctors aside, it's something I need to address. This requires knowledge; I'm not really into the "take a pill and hope it gets better" methodology.

We make Vitamin D3 in our skin, so long as we see the sun every now and then. It's this crazy complex process, of course; nothing in nutrition (or human chemistry, for that matter) is ever simple. When UVB radiation from the sun hits our skin, it's sort of a catalyst for a reaction that uses a derivative of cholesterol (yup) to make cholecalciferol, the first stage of D3. (Interesting: this takes about 12 days from the time of sun exposure.) The cholecalciferol is then converted (hydroxylated, if you must know) in the liver to become calcidiol, which is the "circulating" form of D3. The calcidiol is then again hydroxylated in the kidneys to form calcitriol - the final, "biologically active" form of D3 (a.k.a. what the body actually uses).

Apparently about 2/3 of the U.S. population doesn't get enough Vitamin D. This is totally hearsay (my doc said it, and my chiropractor called it an epidemic; I haven't substantiated that number in any way). But after I got my deficient news of course I did some research, and I came across many papers stating that most people don't get enough, and that the RDAs are probably way too low. Sure, there are foods that are fortified, but most of them have minimal amounts, and some contain D2 which is far less useful to the body. Seems that "Scientists" are counting on us getting out into the sun.

Which makes sense. The D3 that we make ourselves is far more abundant, and more potent, than anything we can swallow in food or pills. But of course we can only produce it when we get sunny - which we're all terrified to do thanks to tireless efforts of skin care companies and overblown news reports. Sun "protection" isn't just for the beach anymore: these days we have SPFs in our lip balms and our hand and facial creams. We've been told we must put on sunscreen before setting foot outside - thus giving ourselves no chance whatsoever to create any Vitamin D. (Frighteningly, failing to reapply often enough may create free radicals that could actually increase risk of cancer. Not to mention that some sunscreens don't block UVA radiation, which also contributes to skin cancer. When considering information about these products, be sure to separate fact from marketing.)

Skin cancer is of course a valid concern. But I don't accept the reasoning that because extremely high doses of an agent can be carcinogenic, the answer is therefore to remove that something completely. Clearly, our bodies are meant to absorb and use sunlight. We are simply not meant to bake in it all day long. This isn't so hard to figure out. Those of us who are the most fair do the poorest when exposed to the sun - and, interestingly, need the least exposure to sunlight to produce adequate amounts of Vitamin D. People with higher concentrations of melanin can spend longer times in sunlight without ill effects, and also need longer exposures to produce Vitamin D. Coincidence? Unlikely.

So my conclusions are pretty much the same as when I come upon any controversy. The answer is in moderation. Spend some time in the sun, but not so much that you'd end up with a sunburn without protection. That's my plan anyway. My hope is to spend between ten and 30 minutes getting some sunlight, at least on my hands and face, every day that it's sunny. (They say hands and face is enough. You know, "the they.") Because I'm so far down, I'm also supplementing. I won't go out in the hottest part of the day, which tends to be around 3-4pm - I'm usually at work then anyway.

As long as it's not raining, I'll go out on cloudy days too. Apparently cloud cover cuts UVB to about 60% of its normal strength - so it's still possible to benefit from the sun when it's not sunny. (This also means that if you're planning to be out and exposed all day, maybe a little protection would be a good idea for the very fair skinned even if it is cloudy.) Clouds also tend to cut down on the heat pretty efficiently, so if the day is nice otherwise and I feel alright, maybe I can stay out for longer. :)

As with so many things, it's about using some common sense and doing what is most appropriate for my body. At the end of the day, what else is left?

Thursday, April 29, 2010

The doctor is... giving me more pills.

Doctor visit number two. And, shock of all shocks: my bloodwork revealed exactly nothing. The Lyme disease thing was an interesting notion. People in my life kept wanting me to be excited about it - "That's treatable! That would be great!" Well, it's somewhat treatable, and they kept missing that little issue where it would have been in addition to the fibro, not instead of. But the tests came back clean, even the fancy shmancy ones from Stoneybrook. So no answers there, and good riddance to the longest two weeks of worrying in my life. Oh, and I'm not pregnant.

What did show up, though, is that I'm markedly deficient in Vitamin D. I guess it's not so surprising - it's hard to get D through food, I don't go outside when it's hot, and during the winters here in NY the sun isn't even strong enough to make the skin do its cholecalciferol mojo dance. What aggravates me, though, is that back in August when my former doctor ran bloodwork (at the end of the summer, when all should be ripe and plump with D3 loveliness), it showed that I was already running a quart or three low. If I'd known, I would have spent the dark winter months supplementing, not just letting it continue to drop. But hey, why prevent something when we could just wait until I'm actually sick and then medicate? Garrrrr.

He wants me to increase my Topamax - everyone does. That's three doctors now. So I guess the jury's in. It's still a pretty low dose. I just hate increasing anything. He also wants to try me on Prednisone. When I was in his office, I was thinking, why hasn't anyone tried me on this before? When I got back to a computer I figured out why. Ah, yes, it's a corticosteriod.

I've been avoiding the steriods for a long time. They do their jobs well; unfortunately they come with a host of unpleasant side effects, and getting back off of them once you've been taking them for more than about a week becomes very tricky business. Prednisone, specifically, is an immunosuppressant. I hate the sound of that, I truly do. I am aware that my immune system works overtime, that that's part of my problem. But the concept of using chemicals to suppress my immune system makes me more than a little uncomfortable.

As far as I can gather, the drug sort of shuts down the adrenal cortex and then mimics the hormones it produces. These include cortisol, aldosterone, and various androgens. Cortisol (hydrocortisone) is the big player here. Cortisol increases blood sugar, plays a role in metabolism, and, well, suppresses the immune system. Normally it is released in response to stress; I'm thinking the purpose of the pills is to give a controlled dose, rather than the spikes I may be getting from my body's natural production. Actually, there's a good chance that I've been stuck in a sort of permanent (or at least continual) fight-or-flight state since my late teens, so who knows how much of it I'm pumping out - possibly way too much.

It's difficult to try to tease these things out for yourself. The processes of the body are quite complex, and it's been many, many years since I took my course in comparative anatomy of chordates. The bottom line is that I'm scared to deal with a new class of drug, particularly one that works by changing my body chemically so radically. There's also some vanity here: I don't want puffy cheeks. But there's another bottom line. It might help me be functional again - by a certain definition of functional, anyway. If it's between dealing with another pill and having to quit my job, well... anyone offering to pay my rent? So, job it is then.

Basically, I'm hoping for the best.

Thursday, April 15, 2010

I am officially in serious trouble.

This depression has been pushing me down beneath the murk for almost two weeks now. At least I've managed to come to work every day (this week, that is). I thought that once a few of my situations resolved it would lessen, but apparently not.

Yesterday I had the appointment with the new doctor. It wasn't great, but it was fine. Sure it gave me something new to worry about - big deal. I know that, as always, my blood work will come back like a shiny new button, wholly unblemished.

And yesterday when I got home, I found my disc of wedding pictures waiting for me. Unlike the first one (which was supposedly the second), this disc was uncorrupted. So now I have the pictures that I've been waiting for. I can make douchey photographer guy make me my prints and albums, and I can my my own albums like I've been wanting to. I went through all the photos and picked out the ones I like.

But still, no weight has been lifted from my heart. I've just found new things to dwell on. The photos? I just... don't really care. They bring no joy. It is just another chore.

I'm sitting here at working, feeling like I will drown in my sadness. Like I am just going to stop breathing.

But for the money, I could go home and lay comfortably in bed curled around my sadness. But for the money, so many things.

And to think: when I had the time, I squandered it. But then I suppose that is the nature of the beast.

Wednesday, April 14, 2010

Doctor, doctor...

Saw the new doc this morning. He thinks I have Lyme Disease! That's a new one, for sure. Whatever, it's a blood test, he's running a blood panel anyway of course, and if he's right he is and if he's wrong then the subject goes away. I do have all of the symptoms of it. It just doesn't seem likely, seeing as I live in New York City and spend exactly zero time in the woods.

Though, come to think of it... Jonathan's parents live on the side of a mountain. And we do go visit them. And we do tromp in the woods a bit when we go out there... And they have dogs.

Oh crap.

Well, I'll find out in two weeks or less.

I'm having them check on the pregnancy thing too - just so I can put the final nail in that coffin.

And in conclusion, no Lyme Disease please?

Thank you and goodnight.

Tuesday, April 13, 2010


Alright, so my last post was a major downer, duh. I am sorry to report that since last Monday, while my depression has, I dunno, fluttered a bit, I still feel like there is a lead weight sitting on my heart. I'm not thinking so much about the wedding anymore, and thankfully people have stopped asking me about it. There are still things to take care of: I haven't designed an announcement yet, and I need to get on that as it's getting a bit late, plus I'm still fighting with my photographer, and I haven't finished writing thank you notes. I tried, actually, but my hand hurt too much and I had to stop after five. Bagh.

So I still haven't quite figured out what's causing this nasty mood. It came on so suddenly and went through so many dynamic waves that it seems it has to be chemical. There is definitely something hormonal happening - so much so, in fact, that for a good five days there I had half convinced myself that I was pregnant. (I'm not. This has been confirmed by four tests.) I really wanted to find an answer there, even though bearing a child is physically probably one of the worst things I could put myself through. But you see, it's an answer. And it's something that happens to other people. Plenty of them. But... no.

OK. So what then? The only smidgen of an answer I can come up with is that I feel like everything is too much because... well... it is. Putting the wedding together was both emotionally and physically difficult, and then it was a disappointment. I am now married, which though it isn't much of an actual change is a huge thing to wrap my mind around nonetheless. Plus - I'm just sort of trickling this information out, because it's still far away and contingent on many factors coming together - Jonathan and I have pretty much decided to move to New Orleans next year. So that's enormous on more levels than I'd care to count right now.

And then there's the health issues. Tomorrow morning I'm going to see a new doctor, since my old doc won't take my new health insurance and I haven't been too thrilled with him lately anyway. It's always so nervewracking to see new doctors. You just don't know if they'll listen to you, or just try to shove drugs at you, or belittle your pain and other symptoms, or what.

On top of that, on Friday I'm finally having my left two wisdom teeth taken out. The top one has been broken for about eight years. (Yes, you read that correctly.) I'm fairly terrified of the surgery itself - will the gas make me sick? will I feel pain when I'm not supposed to? will there be complications removing the teeth, making everything take much longer? will they have to cut into my jaw? etc, etc, etc. I have to go alone, and somehow get myself home afterward, which I'm just thrilled about let me tell you. Then there's the afterparty: will I heal? will my jaw be sore for days from being cranked open like that? will the sounds haunt me? is the pain in my face and jaw actually from this bad tooth, or is it trigeminal neuralgia? TMJ? some other neurological dysfunction?

All of this, of course, is piled on top of my normal host of utter crap. Constant headache, flaring sciatica because the weather keeps changing, sleeping for shit because of everything I've mentioned so far and just because, plus my IBS has been flaring up. And have I ever mentioned that I hate my job?

So, uh, yeah. I'm depressed, and anxious. I think anyone who was in my position right now and wasn't a bit unhappy could be said to be steeped in some serious denial, no? I'm thinking I have some legitimate things to be worked up over. Maybe there is some chemical component; I don't know, and I'm not sure what I can do about it. It would probably be best if I would stop consuming mass amounts of sugar, but that's really hard to do when I'm feeling this stressed. (Yeah, go ahead and tell me it's not an addiction when I'm practically clawing at my desk jonesing for a peanut chew.)

My fondest hope at the moment is that the new doctor is great, the surgery goes smoothly and I recover quickly, my photographer gets his head out of his ass and does what he's supposed to, and I can just start dealing with my everyday life again. Because frankly, that's more than enough all by its little ol' self.

Monday, April 5, 2010

It just sucks, OK?

I want to go back home and curl up in bed and stay there. The bedroom's so bright though - I'd have to make it darker first.

I don't want to be out here in the world, where people can talk to me, where I'm supposed to be doing things. I want to hide. To disappear. I want to be forgotten. I want to quit this stupid job. Like now, today. "My last day's Friday, unless you'd like me to leave now - I'd be happy to."

I'm really fucking depressed. I can find reasons, but I don't exactly know why. I guess that's the thing with depression though, right? It just... comes. Since the wedding I've been going through a cycle - this sit-in-a-dark-corner-crying state, all the way to a happy, motivated, take-on-the-world go-get-em enthusiasm, and back around again. Back and forth three or four times now at least.

Even when I'm at the high points, though, there are some things that I can't get around, can't put a good face on. The situation with my teeth is highly unpleasant. And I'm stressed about going to a new doctor. But mainly it's the wedding. That's what gets to me most when I'm low like this, and what tends to drag me back into it when I'm up in the clouds. It doesn't help that no one, not even my therapist, will really let me talk about it.

No one will stand for it when you say that your wedding just sucked. It's kind of like when you try to explain that your parents are bad people. They always want to tell you that no, it really can't be that bad. But you know what? Sometimes it is just that bad. Some people are terrible parents who do horrible, fucked up things to their kids and cause irreversible damage. And some people have crappy weddings that, once they're all over with, the bride would rather never think about again. I'm afraid that for me, both of these things are true, and I'm sorry if no one wants to hear it. It's not as if I wouldn't like to change it if I could.

So there you go. The truth is out. I had a stupid, crappy wedding, and thinking about it makes me sad. I'll spend the next five years or so building a fable of what it actually was, so that I can think about it without wanting to cry. I'll spend a lot of mental energy focusing on the 10% of it that was really great, so that the 90% that was shit will get a little hazy. Gosh, it's every girl's dream come true.

Am I bitter? Yeah. Is it attractive? On the contrary, I'm sure it's one of my very worst qualities. But honestly, how the hell am I supposed to feel? Everyone wants to tell me, but oh, now you're married to they guy you love. Yes, I know that. And that part's great. And it would be true if we'd both taken a half day off of work and gone down to city hall to get it done. That's the marriage. I'm talking about the wedding - the wedding which was fucked from start to finish... a fact which is almost definitely my fault.

And now the most pressing question: how the hell am I going to get through work today?

Wednesday, March 31, 2010


I've been away forever, I know. But I'm married! The good news about the wedding is that I ended up married at the end of it, and I did get to have a little bit of fun in it all. There was a bunch of bad though, and it's a real bummer when I start talking about it, so I'll spare you.

We'll move on to more humdrum drama: insurance companies and how much they suck! A few months back my insurance provider, HeathNet, was bought out by United Healthcare - who from what I hear is doing its darnedest to become a near-monopoly, buying up everyone in its path. Somehow, through United, I now have Oxford insurance. And the kicker? NO ONE FREAKING TAKES OXFORD! Including my fibro specialist who I've been seeing for four years!

Awesome right? Stupid me, I figured that since my doc took my old insurance, he'd take the insurance from the company that bought them. No such luck. But as regular readers know, I've been kinda needing to find a new doctor anyway. So today the search was on: to find a new doc who both treats fibro and takes my insurance.

Jeez, was that one helluva dead end... at first. As far as rheumatologists in New York City who actually list fibromyalgia as a specialty, I could only find two others besides the doc I've been seeing. I called both offices - both flat out rejected my new "Oxford Freedom Network" plan. Then I cried, went through my everything-is-hopeless-dance, and had myself a little fit.

And as usual, then I kept right on plugging. I finally thought to get on Oxford's own website to do a search for doctors who take their damn insurance - that was somewhat helpful, as it at least provided me with a list of rheumatologists in the city who "participate" in Oxford. (Participate - that's the key word in this insurance nonsense you know.)

But the real breakthrough came when I found this website, FM/CFE/ME Resources. And indeed, what a resource! Using their page which lists doctors in New York who are known to treat fibro, I was able to correlate who takes stupid ol' Oxford (from the Oxford website) with who treats people like me. Fibro isn't always listed in those little blurbs about specialties, of course, so sometimes it's hard to know or do a google search; what are you gonna do, just start calling every rheumatologist in the city? This list of fibro-treating docs made it so much easier.

FM/CFS/ME Resources seem to have similar databases for a large number of countries, and within the U.S. they have all 50 states plus D.C. So if you're looking for a fibro doctor, this may be a good place to start! Good luck with your insurance company. ;)

I've made an appointment for April 14th with Dr. Steven Meed... here's keeping my fingers crossed. Now to try to get my records from my old doc - fun!

Thursday, February 25, 2010

The Sickling.

It makes me angry and sad and frustrated that I had to come into the office today. Getting here was excruciating, a trial for the body and the soul. Now, just sitting here my pain is at a 4 or a 5, and god forbid I try to do anything crazy like walk - it just spikes right up to a 7 or 8. The weather, I think, is at least partly to blame: it's very cold and very damp, with a precipitation combination of rain and fat wet snowdrops. Enough snow has accumulated on the ground that it's like walking on a slushie just spilled, making my already unsure steps that much more wobbly. It hurt like hell to do so, what with the very inflamed tendon in my left foot, but how was I to go out in this without putting on boots?

The answer that comes raging to the forefront of my mind is, of course, "Well, your back is killing you, and your sciatica has been getting progressively worse for several days in a row, and it's inflaming your foot so much that it's somewhat difficult for you to walk... why would you even consider going out in this?!" It seems simple enough. If I'm not in good enough shape to go to work, I shouldn't. If only it worked that way.

See, the real trouble is that I have the audacity to think that I get to be like other people and go off and have a wedding. I really do have some nerve don't I? The wedding is eating up 10 of my days for the year, plus three more for the weekend I just took to make preparations (and see my neurologist). That's 13 down. I've already missed two days this year because I had headaches so bad that getting on the subway was absolutely out of the question - that's 15. So even with the fairly generous number of vacation/sick days afforded me by this employer, I only have 7 days left to last me the next 10 months. Not even one day per. This is bad math.

What I really and truly wish is that they would let me take unpaid days, but for some reason that is out of the question. I would understand it being a problem if I just wanted to take one vacation after another, but I have some fairly exceptional circumstances here.

Or do I? After all, who am I to deserve time off in the days leading up to my wedding? Who am I to think I can just blow a week on the frivolity of a honeymoon? I know full well that I'm sickly. I should be more practical. I should be keeping those days so that I can call out when I'm ill. After all, it's not as if I'm human. I'm just the sick thing they stuck in the basement when I became too much trouble upstairs.

And I wonder: how much longer can I live like this?

Wednesday, February 24, 2010

The Food Plan.

So, the wedding is in 24 days. That is not a lot of days, and I pretty much feel like crap.

Now, I am not under the impression that I can cure myself and feel fantastic for this event. But I do think that I owe it to myself and to Jonathan to do everything in my power to feel as good as I can. I think it is far past time to buckle down and do what I need to do with my diet, at least up until the wedding. It's quite simple really, and it is I'm sure what I really should be doing all the time. But like all of us I live in this modern world with my bad habits only being encouraged by an overly taxed schedule. Perhaps I'll be able to develop new good habits though, or eat more along these lines, once I've been doing it for a couple of weeks.

So what does this plan entail? I want to really focus on whole foods - like as in only eat whole foods. Foods that I can see the structure of: beans, rice, whole grains (not whole grain products like bread, mind you, but actual whole grains such as quinoa and oats), fruits, vegetables. My hummus I think is still good, because even though it ends up as a paste-like substance, I myself see it in whole bean form first.

I'll also be cutting out sugar, and really making an effort to drink more water. I've been doing fairly well on the water front, but I want to step it up. On the sugar front I've been terrible, and it needs to stop.

So that's pretty much it. Breakfast will be muesli soaked overnight in almond milk (one of my few concessions); lunch and dinner will be some combination of beans, grains, and raw and cooked vegetables; and snacks will be vegetables and fruit. There will be plenty of water, and of course my herbal teas with just a smidge of agave, because it is warm and comforting and sweet and filling and is somehow the one thing that can calm my sugar jonesing.

I re-invoke my old plea: keep your fingers crossed for me.

Wednesday, February 17, 2010

What a drag.

As usual, another update that's long overdue. I have been busy, and to an extent I have been sick. Headaches are kicking my ass, along with fairly crushing fatigue. I of course know that these two likely have something to do with one another.

Most days lately, I pretty much feel like I'm just dragging myself through. Dragging myself out of bed, dragging my clothes on, dragging myself into the kitchen, dragging myself to work and through the workday... you know. Last week I lucked out and had a snow day, which is a very good thing because I would have had to stay home from work anyway for the headache I had. I ended up needing to stay home the next day as well...

me: i'm having a really hard time baby. I really can't decide if I should try to go in at all. it's just so miserable to be there - it hurts to look at anything...
Jonathan: Damn...sorry baby.
12:12 PM me: plus my hips are really bothering me which makes me kind of scared to go deal with the snow and ice and stuff.
Jonathan: It hurts to look at anything right now, or when you're there?
me: a little bit now, but always there so I know it would be bad.
12:15 PM i'm just so sick of this. I feel like it's one day out of four or five when I'm not just absolutely forcing myself out of the house, trying to tell myself it'll be ok when in reality i feel like total shit.

16 minutes
12:31 PM Jonathan: Yeah...

17 minutes
12:49 PM me: it's decided, i'm staying home. i just don't think it's good for me mentally or physically to push myself to go in when i feel so shitty.
Jonathan: Yeah, probably for the best.
12:50 PM me: i'll drag myself through tomorrow, fueled on the knowledge that i won't have to do it again for three more days.

The Wednesday before this I'd had to stay home as well. That's two days of work already used up in a very young year, and with the wedding eating up half of my vacation/sick days I don't have many to spare. Monday was a holiday, and again it's a good thing because I don't know that I could have made it in. All I really wanted to accomplish was to make a king cake, and I couldn't even get that done - no way could I move around like that with my face hurting so much, and then my stomach decided to get into the act too, and how. It's been so hard to get to work and then stay there that I've been looking into short-term disability. I pretty much hate the idea that things have gone that far, even with my new, significantly easier position, but disliking reality does not change it.

As of yesterday though I'm actually doing alright - thus the extra blogging. And as long as I'm still having alright days... you know? I have of course overextended myself with obligations, so that just keeping up with what I've volunteered to do drains whatever I have left after work. I'm bad about that. (Thus the stealing time from work... ahem.) We're also only about four weeks out from the wedding now, so things are becoming much more pressing in that department. I'm actually spending this weekend in New Orleans - it will be a bit of a trial, I think, as traveling is always somewhat difficult and I have many things to take care of while I'm there. But it provides a nice break from what's here, and from the ultra-cold, and I'll also be seeing my neurologist while I'm there. Perhaps he can crack the code of these headaches.

On the medication front... I just don't know. It doesn't seem wise to start something new a few weeks before an event as large as a wedding, when I'll be traveling and stressed and in the spotlight. Because even if something new might help, it's pretty much always a rough transition. Even if I feel crappy now, it's a somewhat predictable crappy. And what my body does to itself is in a whole different category than what can happen when adjusting to new medication - or, god forbid, when it takes badly to a drug. So maybe in April, but not now...

Tuesday, January 12, 2010

My long overdue post to tell you about my completely changing life.

Alright. Well what you know already is that since the new year began I've been slowly tapering off of the Savella. It's going alright, I guess. I am noticing a real tangible increase in my stiffness, but nothing too severe. There's been some gastrointestinal stuff as well, but that's been happening in different incarnations throughout my time on the drug. And there's been moodiness, but it would be folly to blame that on anything but me being me.

But there's this giant thing that I haven't told you about. So, the Monday after the New Years break, I went into big bossman's office. In a nutshell I said, my health sucks right now and I need to work normal hours, and I can't get my work done in normal hours, and there's no one to give any work to because everyone I work with is already working like a lunatic. Of course my hope, in going into that room, was that maybe we'd, I dunno, get more help or something? It seems pretty common sense that you can't keep increasing the amount of work that you need done without ever increasing the number of people to do it. However, bossman's solution was: That job and that department will always be crazy amounts of work and crazy numbers of hours and it's never getting any more people. So what you need is a different position.

And boom, just like that, they pretty much took away my job. One that I more or less created by virtue of being who I am - except that I'm not capable of working like that anymore. At first I was totally freaked. It was kind of, "I'm officially too sick to do my job." And also because it was a total shock. But throughout last week it sunk in.

And you know what? Fine. They want to do a terrible job of managing their department? Fine. They want to put me in a different position, where I'll do less, easier work and get to work normal hours and take lunch like I'm a human being? OK. That sounds pretty cool. That sounds, in fact, like my job will no longer contribute to my illness. That's the hope, at least.

So there's the medication. And there's the job change.

I'm also trying to pick up good habits and leave bad ones behind - always a good activity for a new year, right? I got a cute (stainless steel) water bottle to keep at work, and that's encouraging me to drink a bottle of water every day. Progress! I've been focusing on eating real, whole foods - the kind you can actually identify on the end of your fork: whole vegetables, rice, beans, that kind of thing. I've been making my own hummus! Easy and awesome. And even though the test for Celiac came back negative, I've been limiting my wheat consumption - we eat way too much of that stuff here in the states.

I'm trying really, really hard to limit my intake of refined sugar. This is my devil! I've decided what I'll do is tell myself it's a weekend food - no ice cream till Saturday, for instance. That should at least cut down on what quantity I can cram into my mouth long-term. For my tea in the morning, agave nectar! It's only Tuesday and the cravings are already getting bad, but maybe it's just some kind of hump I have to get over.

Now if I could just convince myself to do the stretching thing like I'm supposed to... But you know, when I get home at night I don't want to do body things. I want to do brain things. I want to read, or blog, or hell, even play my silly Facebook games. I don't want to think about my body. But it's something I have to get over. What can I say? I'm working on it.

Also, I've decided it's important that I leave my house every day. Even when it's crazy cold and snowing or whatever, even when I don't want to. Even if it's just to go to the drug store up the block and then come right back, I have to get dressed and go out every day. Some days that's going to be really hard.

The hope is that with this new job - because, really, it is a whole new job - things will be better. Less stress, fewer hours, and really just less work. I've changed my hours so that I come in later, giving me more time to get ready in the morning: I can do things at a comfortable pace, which means less frustration. And I'll get off of work on time, giving me more time for myself in the evenings. And of course no more working on weekends. Overall, the whole thing means more time for me - for what I need to do and want to do. What a concept. :)