Scraps (n. ,fem., singular)

Actually, I had the news yesterday but I was so busy finishing up this week’s strips last night that all I could do was fall into bed, exhausted, around 1am. Blogging was a brief afterthought as I fell asleep.

So. Anyway. Monday I started trying to find out which surgeon I’d been referred to so that I could follow-up with them in case they didn’t call me [fast enough]. Yes, I know, I’m pushy. I prefer to consider being my own best advocate. I started by calling my doctor’s office but had to leave a voicemail for the nurse (who is not my favorite, she has a very, um, unresponsive personality and doesn’t exactly exude energy) so I tried a different tack.

Based on the names of possible surgeons my doctor had mentioned on Friday, I looked them up in the Provider database for my HMO and found they all belonged to the same practice. Well, that made things seemingly simple so I called to see if they’d received my records yet. No dice. Another call (message) to the doctor’s office.

Tuesday morning, much to my surprise, I get a call from Nurse Naps-&-Walks that they’d sent my records to a different office entirely. No biggie, at least they’d been sent _somewhere_ on Friday so Tuesday was a totally appropriate follow-up day. Apparently they received them around 2pm Monday (so much for timely) and the scheduling nurse had left at noon, so she  hadn’t gotten to me yet. BUT! She was not only positive about me taking the initiative (”rather than fall through the cracks” was her exact phrase) she got me in to see a surgeon in an hour!

After picking up the disc with my ultrasound images on it I headed over to the hospital. My doctor is a very nice redhead who actually seemed to know what the hell Carcinoid is and totally didn’t dismiss me (granted, I was nervous and stressing a bit so was full-on flushing, kinda makes the case that more believable when its sitting in front of you in technicolor, no?) as being over-cautious. To make a long story not any shorter, my surgery is scheduled for next Thursday, the 21st, and will be done in the regular OR rather than same-day-surgery to be better prepared in case anything goes flukey with the anesthesia, etc (a possibility due to the Carcinoid syndrome). She’s also planning to do a liver biopsy to investigate the potential fatty liver (I’m foie gras! lol) the ultrascan and the 2003 MRI reported.

It feels like a small yet very important victory.

The plan is that I’ll spend the one night in the hospital, just as a precaution, then spend the following week off of work, healing up. I have the vacation time to cover what sick time won’t so I don’t have to force myself to go back early if I’m not feeling up to it, and I should be right as rain in time for Dragon*Con. Mom asked me if I was nervous… No, not really. I mean, I’m not exactly looking _forward_ to it, but I was more nervous about trying to get it scheduled than anything else. Granted, I have a right to revise that stance come Wednesday

Tags: gallbladderremoval, dealing with doctors

So I finally went to the doctor today. I was sure she’d absolutely hate me for coming in with a laundry list of things that were wrong but she was actually really cool about it. The results of this are as follows:

1) I went for x-rays on my foot. It’s still sorta messed up from the slamming the piggie toes took about a month ago. The theory is that even if something is cracked in there, it may be too late to set it, but we’ll see just in case.
2) Tuesday morning I go in for two ultrasounds
2a) Abdominal because last week’s unpleasantness and the after effects sound a LOT like a gall bladder attack.
2b) Pelvic to check for fibroids (because Mom was recently dx’d with bunches of them and it’s genetic, better to, if nothing else, have a baseline for future reference) and anything else (like a sneaky carcinoid tumor or cyst or anything that could be wrong… it’s one of the few places we haven’t looked and my symptoms are back so…)
3) Bloodwork orders for next week
4) The pain in my right thumb is not Carpal Tunnel (yay!) but is tendinitis (eh). I have two more weeks in a brace and if it’s still bothering me I’m to call TOC for a cortisone shot.

Lots of bases covered but at least I feel a smidgen more in control of the situation and, well, that helps.

Some days you win, some days you lose. Today was sorta in the middle.

Work was okay ’til lunch. When said lunch decided it didn’t want to play nice. Granted, I didn’t feel too well after supper last night (which was the same thing: Garden Salad with Salmon, simple, healthy, tasty) but I thought it was a fluke. Er, no. So, okay, feeling very ill for a couple hours while I trudge through some receivables reports. Enter confused client. Confused client is sorta disputing an alterations charge because the salesman (big surprise) neglected to inform, yadda yadda yadda, Boss walks in as I’m getting off of that call, explain to him what he overheard, have to dress-down salesman who tries to tell me he told the client all about it (which I doubt since there’s nothing in writing and it’s a credit card order and he knows we have to have price changes in writing).

And my body said no. My face and chest splotched bright red and stayed that way, burning, full-on flushing, for the rest of the day. Which, you know, might not sound like much but it’s actually really draining. Thing is, this isn’t the first time this reaction had happened, recently, I’ve been having more symptoms in the last month or so compared to the last 6 months prior combined (or longer). It kinda bums me out that this stuff is back again, that I might not be able to breeze through that next round of dr’s appointments and labwork in September. It’s not what it was 3 years ago, before I knew what it was and what I could do to help the situation, but it’s ramping up a bit. Trying not to spaz about it, and all, but it’s annoying.

On the up side, though, I totoally managed to get all the inking for this week’s comics taken care of tonight, scanned, uploaded and blogged. Whew! That’s what took today from majorly sucking to being moderately okay. Had a very safe supper, ditched the rest of the salad leftovers, and am looking forward to a much better day tomorrow. I think it might be a good time to work on the next article and play with the Print Gocco kit, finally: two birds, one stone.

Posting last night totally slipped my mind in the chaos of everything I was trying to get done. That’s why I’m blogging early tonight before I have a chance to get sidetracked.

Had to go to the hospital today for an appointment with an office notorious for running behind. Today was no exception as they had two ‘issues’ come up so I was glad I brought a magazine to read. Now this was a new dr’s office for me (I know! Like I needed another specialist. This is a much more mundane sort of specialist but still…) and not exactly a pleasant how-do to meet a new dr, so I was expecting perhaps a smidge of the old white-coat hypertension. Dude. My bp was 106/68. That’s pretty doggone relaxed, especially for me! Apparently the CS isn’t completely out of the picture as that is the /only/ conceivable reason for it to be that low. Oh, well, as long as I don’t start feeling light-headed or spacey (more so that usual) I suppose there’s nothing really to worry about. Again, it’s a good problem to have I suppose.

Anyway, after finally getting back to work for all of an hour and a half (in which very little was accomplished) it was time to head off to a work function in Midway. Someone please tell them about air conditioning and closed doors! Whew! It was rather humid but the barbecue was good. The guitarist that was doing a lot of easy listening covers wasn’t bad, I skipped the beer and wine since it was a small drive home and the sample freebies were okay.

Of course, this was the double booking: Usually I would have gone to write tonight but, well, that didn’t happen. So I’m going to work on the third article tonight and tomorrow and spend the rest of the week getting the visuals done so I can file them this weekend. Deadlines are creeping up on me and I’m a smidge behind. But I’ll make it up this weekend.

At least not for quite a while. I had this weird feeling that I’d forgotten something even though I know I hadn’t. I’d completed most of the items on the to do list and the one that wasn’t got a decent start. I checked that the doors were locked, everything turned off that was supposed to, nothing was wrong. And yet, I couldn’t sleep.

I ended up reading an entire Stuart Woods novel that Mom had leant me and finally was able to get to sleep sometime towards 4am. And overslept a bit. I wasn’t all /that/ late for work, but I was rushed and didn’t have time to stop for gas on the way in. At 10 I had a dr’s appointment so I left early enough to take care of that little detail only to find that the gas-cap was, in fact, not secured. Now, I’m compulsive about turning it until it clicks once or twice and I hadn’t gotten gas in almost 2 weeks so how it came loose is anyone’s guess, but in light of this little development I’ve decided to give that pesky light another couple days to reset itself. Grr

And then things got really interesting.

As I approach my dr’s office I notice signs advertising a (new?) dr’s office in the area all pointing in the direction I was heading. See what’s coming up? Yeah. I kept thinking that maybe he was renting the other half of the building but, no, when I walked in the lobby stretched all the way across both halves (a change) and it was clearly redecorated.

Bewildered and a bit irritated since it was four minutes until I had to be who knows where, I tap on the receptionist’s glass and explain my confusion. She wasn’t exactly sure where the new office was but thought it was on Centerville (where I’d just passed but is split so backtracking gets a bit interesting). Luckily I had my old appt card in my purse so I was able to call and get the new address. Fifteen minutes, two circles around a warren of small offices, and two different mis-guesses I finally find the office, only to find out that the doctor isn’t even in yet! Oh brother.

Now, granted, he’d been on call all weekend at the hospital, I later found out, and got hung up on a consult that morning, hence the delay, but it was a full 2 hours before I got back to the office. The good news is that things are still moving in the right direction, he’s happy with my progress (even if it is incremental) and will see me again in March unless something else presents itself.

The rest of the day was blessedly uneventful until I got the initial pictures from Q. She’s awesome, I just wish I’d given her more to work with. I really need to work on my posture! I’ve just barely narrowed the 66 shots to my fav 10. And you really can’t tell that we were all sweating buckets in Sunday’s humidity.

And tonight, thank heavens, television has returned. Yay! And I will say that holy hell but Heroes has won me for another season. I really didn’t expect to watch this season since the original plan had been to dump the season 1 cast and start fresh which made no freaking sense. But after tonight’s episode I barely know what to make of some of the details but I like what I see so far.

So. First thing first: not nearly as perky this morning at 6am as yesterday and I accidentally grabbed the cranky pants (or skirt as it was) from the closet so I was not a joy to be around. Thankfully I was quite content to stick to my office and not venture out unless necessary. Too bad no one else got that memo.

Basically it happened: I jinxed myself. It was inevitable. Concentration? Shot. Productivity? Nominal. Overall wellness? Not exactly there. And then I got the phone-call.

Last month I had a chance to go by the vampire’s for my serotonin check but then the office never called with the results. When I called yesterday to schedule my annual I asked about it. This morning the nurse (yet another new one, why must I keep breaking them in???) calls to let me know the results were normal so they didn’t bother calling me. Um, hi, check the file babe: it used to be high so knowing it was normal again is sort of important. But of course it’s not her body gone haywire, I’ll bet she eats pizza once a week without becoming violently ill or having an irregular heartbeat for a freaking week and a half afterwards. I had to ask again to get the actual number: 82. Compared to the 217 from last fall thi is good news.

Let me repeat that: this is good news. I know this, I’m happy about it, and it fits since I haven’t been sick lately (well, okay, except last night but thats what I get for eating at Chilli’s, even when I eat something safe like grilled chicken soft tacos: such is life). The only dilemma it poses is the reason why: more that likely it’s because I have myself on a rather restricted diet, basically nothing that’s high in tyramine or seratonin–what I call the game of let’s not aggravate the tumor (or whatever it is). The other option is that the high reading was a fluke before and my body self-corrected. The only way to really prove that is to ditch the dietary restrictions (what I wouldn’t give for pizza or good old spaghetti sauce; seriously!) and see what happens both physically and chemically but that’s taking a pretty big risk knowing the potential damage it could do. That just doesn’t make sense. So I’ll keep doing (or not doing) what I have been and hope for the best.

Im still on the fence about the one test we haven’t done yet: the bone marrow biopsy to rule out systemic mastocytosis. It would mean yet another doctor and a rather painful experience with a needle, but at least it would be one more thing we could either confirm or deny. Considering there’s been very little definite about this whole process the last two years, the potential for another inconclusive finding is high. Do I want to put myself through it? I don’t know… I’m such a wuss when it comes to pain, on that part I’m a definite ‘no’, but I’ve also been so adamant about trying to find a cause for the skin flushes and the digestive issues, the heartbeat irregularites. The usual suspects all come up no, so we’re on this short list of rares and maybes. I will say I’m a lot more calm about it now than I was about 12 hours ago when all this came back up again. I could get away from the majority of the doctors and just hope for the best, but what if we miss something that could be treated or fixed and I wouldn’t have to be so hyper-aware and high-strung when it comes to every activity, every committment I make. Coin toss anyone?

But some good news! Let’s end on a happy note. Since I wasn’t in a frame of mind to do much tonight, I finished the back panel of the sweater tonight, so I guess that puts me around 30% done for this project in only 4 days? Not bad for a garment. And I got the lacquer done on the keyboard and mouse (pictures another day, once I get the monitor dressed up as well I’ll do a page of the process with lots of pictures), reattached all those keys and guess what? It works!!!! I’m typing on it now. It’s still one of those tiny space-saver laptop-type keyboards and the mouse is not at all ergonomic, but it’s now cute and awesome and works and I can free up one of the USB ports on Minnie. Actually, I can keep the scanne plugged in all the time and still be able to have a swap-out port for the external harddrive and camera cord to share. I should really get a hub but now that I realized that Sonja has a built-in card-reader it may not be nearly as necessary for everyday stuff.

I’m crossing my fingers for tomorrow to be better.

hah! I’m back, and so are the daily word counts. Last night my MC was taught to play Texas Hold ‘em by two of the supporting characters and not only is she winning (I dealt real cards, it’s amazing how it worked out, really!) I think I might actually be able to play without notes when Andrew comes to town (i.e. Thanksgiving). Penny ante anyone?

In general my pace has slowed down, writing wise, in part because I actually had to deal with the cards and keeping track of how it was supposed to go and would SC2 stay in or fold with that hand, that sort of thing, because realism is important to me and you canna change the laws of poker and all. Right Scotty?

Anyway, it’s also slowing down a bit because I’m building up to the first true conflict of the story. The inner should I/shouldn’t I of the MC can only count for so much and is only tolerable for so long before some outer event, one she will blunder into on her own and realize only too late, needs to happen to add actual tension to the story. That’s coming up, and I’m trying to decide whether I need to go straight to that scene, thus skipping the one I had in mind before it, or keep the scenes as I planned. I worry a bit that I’m spending a bit too much time before the first conflict and if I’ve managed to build up characters enough.

Why, yes, I do believe I’m overthinking this, considering it’s quantity over quality month. But really, it’s not quite halfway through the month and I’m fairly comfortably over halfway done, so if I choose to dither about what goes where as I’m writing, so be it.

I’ll probably keep the scene in, maybe summarize bits that don’t need to be drawn out so much, for the sheer fact that it’s another party scene and they are good for word count. If I start to bog down I can wrap it up with a summary of the necessary bits, and move on to the nearest pivitol scene. Considering this is still Part 1, I’m good, but I don’t want it to drag. Plus there is the subplot that crept in about 20 pages back (I’m somewhere like on page 105 or some such right now) that needs to be checked in on, but that might need to happen after the conflict… might add more fuel to the fire that way. Don’t know yet.

* * *

Now then, what else happened yesterday? Ah, yes, another doctor’s appointment. Thankfully this will be my last, it seems, for a bit, perhaps even until January. This is a mixed blessing I’m sure, but hey, I’ll take what I can get right now. Dr Z agreed that we’ve ruled out Cushings and Hashimotos for the time being. He’s not taking Carcinoid syndrome off the chart yet because since we’re still testing it and for insurance reasons if nothing else it needs to be there to support the further investigation, though he’s still not sure about it. What he does seem sure of is the Metabolic syndrome, which, while valid IF my bp was climbing into the stratosphere or my cholesterol was doing bad things or I was into some sort of cardiovascular disease or an insulin resistant diabetic, which none of those things apply.

Metabolic syndrome/disorder is a set of risk factors basically, and depending one whose set of factors you go with you need at least two or three positives before it’s diagnosed. And then its just a whole health thing treating the symptoms, etc, some lifestyle changes, some medicine (for cholesterol or lipids, isulin, etc.). The only positive I have for the is my weight, which I’m working on. So how he can type me as that when even he says ‘not now, but 5, 10 years down the road you could be diabetic with serious problems’ is beyond me when, in classic double standard territory, he won’t admit that my current symptoms consistent with carcinoid syndrome could be the warning shots of a disease in the early stages. Or, at least, he wouldn’t until I put it that way, then he finally admitted there was some validity to that. Thank you! That’s what I want, to have this taken seriously. If it means I have to go annually for that massive amount of blood workup to watch trends (providing the scans and scopes are clear) then okay, as long as you’re willing to keep watching and looking, I can deal with that rather than telling me, ‘nah, it’s not worth bothering to look.’ The metabolic syndrome also does nothing to explain the symptoms I’m having, meaning it still doesn’t solve the problems at hand.

SO. Now I wait for the go ahead from CHP for my octreoscan. And here’s where it might be January again. See, there’s a place in town that does them, but Dr Z would really prefer me to have the scan at Shands because of the fact that they are more experienced with the scans, that they would know better what to look for, and that it would be more reliable than having it done here. The down side, of course, is that I’d have to spend three or four nights in Gainesville, so there is vacation time to be needed, hotel rooms (of course there is a discount option for hospital things nearby with a shuttle even, so I may have to look into that) and so forth. Hence, IF we decide to have it done at Shands then I would have to wait until January to have it done, or the very beginning of February, since my next appt with Dr Z is Feb.13

The other thing I was able to discuss with him was the possibility of systemic mastocytoses, which is something else that could be causing the cutaeneous flushing along with the intestinal issues, and would be consistent with an elevated Histamine level, which I had back in February of last year along with the elevated 5HIAA. We’ve not done another, and apparently are not going to as that is very subjective and hard to pinpoint and labs tend to screw it up. His words. But then we get on a whole slipperly slope about how if one test is unreliable at that lab (or even several are) how can any be trusted and do we really want to go there? Yeah, I didn’t think so. The other way to check for this other possibility though, is a bone marrow test (ouch!) which is done through the hip bone (OUCH!) and would require yet another doctor, this on a hematologist, since it’s an overabundance of mast cells. So apparently we’re not going down that road yet.

Also apparent is that I’ve got to start walking a thin line with just how concerned I’m allowed to be about my health or someone is going to insist on putting me on  happy pills to the point where I won’t care that something is wrong. So, to keep from being dealt the crazy hypochondriac card, I’m going to do my utmost to not pester the doctors, not ask questions, and not admit to freaking out or having blue days or feeling a bit resentful because I can’t seem to make plans with friends, etc. because I cannot be sure how embarassing the intestinal issues will make the situation, or my flushing will make people think I’m breaking out in hives or having some sort of attack. Because then one doctor or another is going to be all too happy to write all this off to anxiety, tell me its all in my head, and have me committed.

While I could use a real vacation, Sunnyland is NOT my idea of a vacation.

And still barely at the beginning of the story. It’s only through chapter 5 at this point, and the chapters are a little small I’m thinking, but I put in a new chapter number when I reach a decent stopping point. It’s going well, though, and I expect to make it to 12500 after tonight’s writing session. Considering I have a 4 hour write-in planned for Saturday, I could be looking at being halfway there by Saturday night. Wouldn’t that be great? I’d totally be able to take Monday off (reward!) and then maybe take the laptop to Borders on Tuesday to write before Knit Night.

# # #

(doncha just love this split-recaps)

This will probably be the last illness-related update until the end of next week after I have my GI consult. (gosh but that always makes me think of Marines…) Yesterday I got to Shand’s about 1:00 and went ahead and checked in at the reception desk on the third floor. I had a few moments of vertigo again, and I’m wondering if it has anything to do with elevators? Elevators combined with exertion? (I had to walk a bit to get from the parking garage to the med center) and I’d barely sat downto sign the miscellaneous paperwork when they called me back! Apparently the double-booked slot before me had both no-showed so I got in early and got out about 10 minutes after  my appointment was supposed to start. I’m hoping it was because of the aforementioned exertion, but my bp was 143/94. Holy cow that’s high! (for me at least) I should have asked them to check it again before I left. Oh well.

Anyway, I need to make this quick because I need to leave for work, but after talking things over with this doctor, he is one more of the opionion that Carcinoid is unlikely. Okay, horse. dead. beating. BUT! Somehow he also thinks that doing the octreoscan *is* a good idea, that there is just cause to do so, and he’s writing a letter saying such to my local doctors and that will, hopefully, convince the HMO to approve the test to be done locally. If not, I’m to email him and he’ll either get it done up here or I’ll go back down to Gainesville for 4 days for the test. As I’m totally out of vacation time until January I’m hoping that CHP will cooperate but… we shall see.

It’s a Phyrric victory, though. I’m so tired of people telling me what it’s not without telling me what it is! I told Dr. K yesterday that, I want it found and fixed. He said, that’s not always how medicine works. But he’s humoring me, and for that I have a profound sense of gratitude. Humor all you want as long as you keep running tests, keep at least pretending to try and find it, whatever ‘it’ is.

For those of you who read this and pray or light candles or whatever your form of good vibes take and you’ve been doing so for me, I thank you. But if I may make a small request: Don’t pray that they find nothing, pray that they find something. Please. It’s not, as I’ve said before, that I want to be sick. I don’t. But I am. Something is legitimately wrong somewhere inside my body. And if these tests, the octreoscan and the endoscopies, come up with nothing, it could be years, maybe a decade, of dealing with these ‘inconveniences’ (and yes, that’s putting it mildly some days; trust me that if I completely spelled out the kinks this has put in my life you would be not only a twinge more sympathetic but rather grossed out at the same time) before they are willing to try and look for it again. I need answers, a direction to go in, a name to put to this. Ideopathic isn’t an option, it isn’t an answer, at least not a good one. So if you pray, pray for that.

Two more writing sessions in and I’m doing quite well. It’s only been a day and a half and I’m almost double what the daily minimum should have me at. It was very strange when I opened up the excel report card and entered things in and had it tell me I had 22 writing hours to go and at this rate I’d reach 50K on November 10th. Wouldn’t that be wild if I not only won this year but actually managed to do it in the first 10 days?!?!?

# # #

Today is my Shand’s appointment so I’ll be heading to work for 2 hours before leaving to drive to Gainesville. I’m leaving myself plenty of time for interstate traffic and expect to hit Gainesville around lunch-time so will have time to grab something to eat and then still be early for my 1:45 appointment. I brought the laptop with me, so I can work on the novel a bit more if I choose, but I also brought my knitting, depending on how nervous I get. It’s silly, with as many doctors as I’ve seen in the last  year to get nervous about just one more, but I admit it. Going to a major hospital, driving 2 hours + for a doctor’s appointment, it’s a Big Thing in my head. Today is an evaluation, I imagine there will be a fair amount of chit chat, a look over the recent lab work, and then an exam. Nothing major. Hopefully this will lead to the o-scan, that’s the goal right now. Here’s hoping!

Which to write about? The awesomeness that was the NaNoWriMo kick-off last night at All Saints or the whole lotta normal that was my test results? Hmmm….

Well, let’s just cover both, shall we?

First off: Test results (because they happened first). Picked them up from Dr.Z’s office yesterday and, mind you I didn’t talk to the doctor yet (my appointment isn’t until the 13th), but the lab lists the allowable limits for each test next to my level and, basically, there was a whole lotta normal going on. Meh. I was really hoping that somewhere in those 24 vials of blood (23 on Monday, 1 on Tuesday) that something would show up. Thyroid checks out and totally normal, so the Hashimoto’s Thyroidism doesn’t seem likely. My Cortisol went from high-normal to the basement after the corticosteroid treatment, which is what a functioning set of adrenal glands do, so Cushing’s Syndrome doesn’t seem very likely either. I looked up the factors for the Metabolic Disease in the NET ‘bible’ and we’d really be skating a thin line to call it that.

The one thing that was elevated beyond the allowable limits was my Serotonin. But not very much (sigh…). when you’ve got a spread of 197 points and your only 14 points over, is that enough to convince them to keep looking? I realize that in order to play by the rules you have to have biochemical findings to support further exploration both to keep from wasting time and money and to reduce the amount of wear and tear on the patient (for instance they don’t want to irradiate me too often if it’s going to keep coming back normal). I get that. But also, on the converse, having a strong theory of what is wrong and yet having to wait until it gets bad enough to show up on the tests doesn’t seem right either. It’s like finding out the foundation of your home is starting to crack… do you go ahead and fix it now or wait until the house caves in and you can undeniably confirm it?

Anyway… I got down to Shand’s on Thursday and, hopefully, they will come up with something. Since I have the test results maybe one of their gurus can look at everything together and pick it out. Maybe it’s like one of my friend’s has said and it’s several small things working against each other, but heaven only knows how we’d figure it out. Plus, on the 9th I go for a consult with the GI, and if nothing else will get the endoscopies done and maybe their cameras will find something to lead us in the right direction. Mom, bless her heart, is really hoping that they never find anything. I know she means well but, really, if they don’t find it they cannot treat it and that’s not exactly helping when we know *something* is wrong!

NEXT!!!

The Kick-Off last night was absolutely stupendous! I knew the RSVPs were rolling in but still I thought it would be manageable until I did a tally yesterday and counted almost 30 positives!!! I hastily sent out an email and updated the post on the forum to show that we would meet on the back porch of All Saint’s Cafe. After getting stalled by a train that just decided to STOP on the tracks (after already being the longest train in creation) when I was but a block away I still managed to get there at 5:30 and some people had already showed (? shown?)–people were already there! But at 6pm we were looking at maybe a dozen. Okay, I’m cool with that. Things came up, no problem. I was feeling a tad better about not being overwhelmed. So I started my talk, introduced myself, and asked for a show of hands of how many newbies we had. All of them (well, except Palmetto, but she was sitting to my side so I wasn’t looking out at her so much). So I start to go over the basics and I hear something behind me:

Apparently, despite the emails and forum posts and the sign I put on the front door of the coffee shop there were several people sitting inside waiting to spot the day-glo yellow shirt I’d said I’d be wearing. (Seriously, y’all, this shirt will burn the retinas!!!) So then, after the word spreads, in comes another dozen plus people: We ended up with 28 WriMo’s OMFG!!!!

Once everyone was signed in and back settled I just had to stop and look around and say ‘wow’. Everyone laughed. In fact, for the most part, I had them all laughing pretty much throughout. (pardon the moment of ‘they like me, they really like me’) The puppets, though, were a very big hit. Of course they were dorky and the Henson family of puppeteers will not be calling upon me any time soon but, no, really, they came off rather well. My attemps at audience participation didn’t quite go over great but, you know, you can’t have everything. Then, per HQ’s request, I plugged the photo links and Flickr site and got everyone (but Palmetto) to pose for a group picture. Will have to get that off the camera tonight after the Halloween party at Julie’s.

Yay! We have tickets! We thought we’d found a deal through Orbitz but, by the time we could get my aunt on the phone to make the reservations they had been sold out from under us. Such is the travel game, no?

She tinkered a bit, had sessions time out and all manner of increases after 2 seconds but finally found flights on Delta that DON’T go through the dreaded Charlotte and get us there and back at reasonable hours. Granted, we’re flying into Newark (which I cannot say without over-pronouncing the final ‘k’ in a separate syllable) but hey, this means we get a 90 minute tour of the New Jersey countryside coming and going. Hah. But hey, I get the window seats! Woot!

In other aggravation, I decided to call and check on my referrals since I had yet to hear from the gastroenterologist about setting up an appoint and while I’m not exactly looking *forward* to getting tubed, it does need to be done. Well, imagine my surprise when not a single referral showed up under my policy number. Not even referrals to the current specialist or to Shands! Oops!

Thankfully I soon found a human being to ask about it (instead of just the automated system) and there IS the gastro referral but none of the others. So…. after a few calls to my doctor’s office and being assured that the nurse has ‘got my back’ (which made me smile more than cringe I’m happy to say) those referrals should be taken care of shortly. Which is good, because I certainly wasn’t interested in driving 2+ hours to an appointment only to be stuck with more than just a co-pay! Also, I now have an appointment with the DDC (digestive disease clinic, how appetizing!) for an evaluation. Sheesh, that’s three appointments with three different doctors the first three weeks of November. This is going to be such a fun month…

23, y’all. That’s how many vials of blood I had drawn yesterday morning… I declare, if they don’t find SOMETHING in all that you might as well… No, not going to tempt fate.

But since I’m a numbers nerd, I wondered really how much that was:

• 8 of the little lavendar tubes at 4mL each (32 mL)
• 14 of the blank and red tubes at 7.5mL each (105 mL)
• 1 of the red tubes at 10mL

147 mL The joke all day was, of course, do you have any left? Apparently I do since I get to go back today and have 1 more tube drawn after taking a double-dose of dexamethazone (corticosteroid) last night. This one will supposedly tell the doctor (by guaging the biochemical reaction to said drug) whether the Cushings Syndrome that we suspect (in conjunction with or maybe instead of the Carcinoid) is merely overproductive adrenal glands or a tumor there or elsewhere. Or at least that’s what my reading leads me to believe.

The plan is, I hope, to have all these results back by the end of the month so I can get copies to bring with me down to Shands on the 2nd. I have no idea how they handle long-distance patients but knowing what I do about different labs and proprietariness, if we can cut down on how many tests THEY need to do, it might cut down on how many times I need to drive to Gainesville in the coming month(s). This is presuming, of course, that something shows up on these tests. I won’t go into my whole spiel about it, but I still think ‘normal’ (when you know something isn’t) is the worst world in the medical dictionary, second only to ‘unremarkable’ (which is what the lab techs used in the CT report from last year).

In other news, my bedroom closet is cleaner than my bedroom, after pulling nearly everything out and then rearranging everything in the bedroom itself. I’m not 100% on where the bed is right now… I feel like I’m listing downhill when I go to sleep. Perhaps I should buy a level to see if it’s just me or if the room really does slant a bit? But I think once I get some projects done in there it should shape up to a happy space. The studio, on the other hand, is still in need of some serious attention but after a cleaning urge hit Saturday night at 2am it’s better. There’s even room to move the rest of the boxes hanging out in the front of the apartment into there so guests won’t see my american-chipboard-decorating theme. I mean, really, it’s just *so* last season…

Little Orange Jug
Oh how I hate you
Little Orange Jug
Your presence I despise

You take up my weekend
Ruin my plans
But if diagnosis follows
I’ll consider you a friend.

Ah, yes, the wonderful medical homework one gets when one is trying to figure out what in the hell is wrong with one. Oh well, honestly I’m not all that irritated because, really, I just skipped 6 months of waiting and that’s not a bad thing.

A nurse called yesterday to tell me I had an appointment with the new endo… in April. (what is with me and april medical issues? some divine retribution for the birth process? anyway…) Also reported is that the o-scan decision was sent down to Shands to see if they would process the request (something about the insurance not denying their referrals as often as local ones? again, anyway…) So while I wasn’t incredibly thrilled by more waiting, there wasn’t much I could do about it (how Zen of me…)

1:14 and the phone rings. Its the new endo’s office, the dr has had a cancellation can I be there at 2pm? Sure! So I scurry out of the office to first go home to grab the Gianormous Binder of Research and Records then back to the hospital end of town to fill out paperwork and wait. And wait some more. And a little more waiting, but it’s okay, because Z finally saw me, we talked (he was not happy about how I ended up in his office, but he got over it) and then did the laundry list exam and then set up some tests.

A few things to note: He’s a chatty little guy and boy-o-boy you really have to listen hard to get the english around his spanish accent! He didn’t mind the amount of research I’d done, said it made his job easier since he didn’t have to explain as much to me. He has some concerns other than the carcinoid, but he’s testing for a spectrum of things this first round and then we might still need to wait and try again until we get biochem.results that will support imaging requests. But hey, he’s willing to work on it and I think (once I could get some words in edgewise) that I adequately convinced him I’m willing to do whatever it takes to get a concrete, treatable diagnoses.

The main hunch from him is either a Metabolic disorder or Cushing’s syndrome. After looking up the former, I don’t see that I’ve had those symptoms but hey, test away doc, but the Cushing’s I was planning to ask him about anyway as I do have some things in common with that possibility. Of course the latter issue brings us back to a tumor-issue and it can be a carcinoid tumor raising cortisol levels instead of serotonin (or both), that type of adrenal tumor can mimic the CS so again, we’re not too far away from the original idea. I only say that because then I don’t feel like I’ve wasted time researching something totally unapplicable. PCOS was also mentioned, in relation to the Cushing’s, but again, I’ve had no symptoms so… who knows???

But I’m happy with the progress that at least appears to be happening. Any theoretical plans I might have had for this weekend need to be altered a bit, but not so much, and two days of lab work and stuff next week might still lead to a hurry up and wait, but maybe these tests will point us in a working direction.

Or, at least that’s what it felt like yesterday when Dr Hart’s office finally called me back.

Granted, I had been fully prepared to seek out a second opinion or a new endo based on her willingness to proceed with her diagnosis. But why, then, was I so shocked and dismayed to hear that she didn’t feel it necessary to investigate further.

After some time to think it over, I know why: I let Friday’s appointment with her nurse lull me into a false sense of security. How very naive of me. I’d like to say that I took the news with a certain aplomb and composure. I’d like to say that I kept an even tone, a professional note in my voice, and conveyed my disappointment and incredulity with the barest change of tone and a straightening of my spine. I’d like to say all of that, but I’d be lying.

You know that pithy little saying about how people are tea bags, all unassuming until you put them in hot water and then see their strength? Funny, I don’t feel very strong.

The one thing I will applaud myself for is not cussing the poor nurse out over the phone. I had to physically restrain myself from doing so, but I managed. Hey, it’s life’s little accomplishments, right? And really, she tried to be helpful. She even told me to take the partial lab orders I did have and go ahead and have them done and she’d tell me the results over the phone (even though Dr Hart stopped giving out results by phone over a year ago–no appointment copays for phone call doncha know?). She also suggested that I see another endo (duh) and that I could even get referred to Shands or Emory. So, Robin, thank you for being kind and wanting to be helpful, I’m sorry you work for such an absolute pill.

So, plan B is already in action now. I called my regular doctor and went in to have a chat with her. She’s going to order the Octreoscan that Dr Hart denied me last year. We’re not sure about if the insurance company will approve it or not, but we’re hoping (the one lab in town that does it requires the insurance approval before ordering the isotope ’cause it’s ex-PEN-sive). She’s also referring me to one of the other endo’s in town, a man known to be brusque but thorough. Frankly he can be House x10 on the asshole scale as long as he does his job.

But while the wheels are starting to turn again there’s still so many wrenches that can fall into the works I just feel like in suspension, like it could all seize up at any moment and I’ll have to start all over again. And emotional stress? Yup, it triggers the symptoms as sure as anything else. All I want to do right now is sleep until we get the go-aheads we need.

And Mom, bless her heart, after hearing that the wonder-drug for this type of thing is not only an injectable but generally not covered by CHP has turned to hoping that they find there’s nothing wrong with me. I know she means well, but for heaven’s sake people: ‘nothing wrong’ isn’t treatable. I know that it seems counter-intuitive, but the thing to hope for is that they figure out exactly what’s going on and treat it, even if it means I have to pay extraordinary amounts of money for the ‘priveledge’ of torturing myself with needles, if it’s a treatment and it helps, I’d so much rather that (and y’all, I HATE needles, so if I’m willing to do this, you know I’ve got to be pretty miserable) than living with these ‘inconveniences’ and not knowing their cause.

Until then, it’s a waiting game. But at least I get this weekend truly off, that’s something to look forward to. I think I want to paint some. There’s an exhibit coming up that I want to get in on. And, well, the theme is Armageddon, the end of the world, and while its a dark topic, I really have an idea in mind that’s been simmering for about two years now. Time to bring it up to a boil, I think…

Who really likes making decisions? Anyone? Even as much of a control freak as I admittedly am, there are plenty that I don’t like to and don’t want to make, but make them I do. Everyone does it, its just a fact of life.

Another non-revelation: I do too much. [I'll wait for the mock gasps and the 'no, not you' comments to snicker their way into the background... done? not yet... ... ... moving on!]

So, anyway, why do I do this too much stuff? Well, I really do like to stay busy, I like to be involved, I’m not a good specatator, yadda yadda yadda. And, in a convoluted way of thinking, perhaps staying busy will keep me from being sick.

Yes, I heard it.

And yes, I know full well that the only way I ever take a break from my too much stuff is when I get very, very sick and am forced to stop and rest and recover. The irony does not escape me, nor does the stupidity.

Sometimes, especially in times of stress, when we’re forced to make decisions we just don’t want to, to face reality, etc. we revert to childhood. Or, at least I do. And this is one of those times. I want to kick and scream, throw one hell of a tantrum, and go pout in the corner for a while until I get hungry then have an ice cream sundae for dinner.

(y’all, this is getting long, if you really want to read the rest, click the ‘more’ button below)

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