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Mar. 6th, 2014

baby

Been Awhile...

... And I sort of feel weird that I haven't posted anything in quite some time. A lot has changed.

First off, it's been about two years since my adrenalectomy, which is supposedly when things are normalized. I guess it mostly is, though I still find myself in the hospital once or twice a year for a week or so. This past February, right over my birthday, I got a cold and was stuck in the hospital for awhile, when I was supposed to only be there overnight. When I get sick, I really get sick these days.

On the bright side, for the first time in what might possibly be my life, I've managed to lose weight and keep it off. I went from 264lbs at my heaviest, to 133lbs which I am currently, and I seem to be still losing. I'm not actually trying to lose weight, either. I eat like a normal person, and it just drops off in spurts. I drop ten pounds, then stop. Then ten more, then stop. It's sort of weird, and none of my clothes fits anymore, so that's annoying. Of course, I've got to deal with stretch marks and scars, and the fact that my skin's all stretched out of shape. I'd love to exercise, but I have a little trouble with that. I get tired fast, unless I'm really watching my meds. That's sort of hard. There's so many things I want to do that have a tendency to be a struggle. But if I can plan well enough I manage. And even though there are times when things get tricky, I'm overall happy I don't feel as bad as I did with all the major Cushing's symptoms. So that's a plus!

In other news... Kassie! She's two and a half now, and, in my opinion, pretty clever. The kid talks nonstop, and by talks I mean real words, complete sentences, and she never, ever stops. So far she knows her colors pretty perfectly, she can count to ten (and starting to get the hang of the "teens" numbers, but not quite), and... um, sorta knows her alphabet. She can name letters, but tends to mix them up in the Alphabet Song. I lover her death, and while I sometimes wish she'd just shut up for ten minutes straight, I'm super proud of her!


Since I missed a ton of showing her off, have some pictures!Collapse )

Sep. 24th, 2012

baby

Stress-induced insomnia!

I hate turning in major assignments. I'm stressed up until I turn them in, even moreso leading up to the turn-in, and then you'd think that after I hand it in and am finished that I'd be able to chill out... but no. Actually, I get worse after I turn it in. I just flip out. What sort of grade will I get? What if I did something wrong? What do I have coming up?

It's like my brain just blows up, and despite wanting nothing more than to just chill, I freak. And usually end up doing something retarded, in the name of taking my mind off things. So of course, that's exactly what I just finished doing.

With Mists of Pandaria coming up... um. Tomorrow, technically. Well, Alex and I have been checking out videos and discussing, and remembering and all that. We've never actually missed an expansion. Sad, I know. Sad, but true. This is probably how Blizzard does it. Emotional attachment. I don't know why, but I feel weird missing a new expansion. And no, I wasn't super excited about Cata, but I'm excited about Mists. So of course, a few days ago we agreed that we'd just go ahead and do it.

Flash-forward to tonight. After a hellishly stressful month with this class, and the fact that upgrading is as easy as a few clicks, AND the fact that I just cannot sleep... I went ahead and upgraded to Mists. Alex will probably eyeroll tomorrow, but eh.

So yes, this is the post I'm writing while I wait for my payment to go through and WoW to open up again. I'm so freaking pathetic. But, uhm, in the name of education! I play WoW in the name of my education. So there.

Aug. 30th, 2012

baby

Holy. Fuck.

Because I am determined not to let my "condition" get me down and keep me at this goddamned weight forever, I went and added more to my already spilling over plate. There's an MMA place right across the street from the apartment complex that teaches MMA, Cage Wrestling, Ju-Jitsu, and Muay Thai. My brother is taking Ju-Jitsu and is absolutely loving it. Alex, my sister, and I started Muay Thai.

It's funny to see how we all approach it. Alex is all serious business when we're there at classes. Emily sort of flounders about at it, tries, but doesn't really push. And I'm dead fucking set on A) losing weight, B) getting in shape, and C) getting good at this. Which may or may not kill me.

Since they're having sale, 20% off on everything, we officially got our gear. Fortunately for us, our stuff is way cheaper than my brother's - Muay Thai doesn't require a lot of gear or specific uniforms. But I now have my own shin guards (which reminds me of when I played soccer...), hand wraps, and gloves. Woo, yay.

Tonight officially beat the shit out of me. There was an odd number of people tonight and there was nobody for me to partner with, so Ralph, one of the instructors gestured for me to partner with him. We'd just finished up practicing some moves and he sort of chuckles at me and goes, "Tough, huh?" At this point I was definitely feeling it, and out of breath, but I wasn't going to go whining or pussing out, so I said, "It's okay. I'm gonna get this, damnit." And I grin at him. He grins back and goes, "Okay."

He then proceeds to pull me away from the rest of the group and what they're doing and kick my ass.

I ended up pushing to muscle exhaustion several times, Jason (the other instructor) and Ralph got on my case about form, forgetting to keep my hands up at my face, and every other little thing... and now that all is set and done... I feel utterly, completely dead. Barely made the walk home and three flights of stairs to the apartment, climbed in the bathtub, and soaked for twenty minutes, and now I still feel... whew. But. It's a good feeling. They complimented me on the way out, said I'd worked hard. I did work hard, and I'm glad they noticed. I'm gonna get this down.

Now, to keep up on practicing and work just as hard on my own until next class...

Aug. 16th, 2012

barrel

ClickJam

This weekend is the first annual 24-hour ClickJam.

A Game Jam is (generally) a 24-48 hour contest in which designers, programmers, artists, and... um, sound people(?) are divided into teams and given the set period of time and create a game from scratch.

I'm pretty lucky for this one - John, the guy from school that I've really clicked with and we've been working together to get our own indie studio off the ground is teaming up with me. Together we're forming the design part of the team, and potentially (depending on how the teams are assigned) the programming as well. As far as design goes we should be okay, we work really well together and both tend to pull more than our own weight. I'm a bit stronger on the creative aspect, the concept, story, mechanics, and so on, while he's a little stronger on the organizing my brainspews, finding and fixing the intricate details, and looking at things from a much more technical perspective. We definitely fill each other's gaps, and that's a good thing.

Hoping the programming part goes decently. I'm able to do it, and I like it, for the most part, but this is a program I've never touched before and I've had less than a week to play with the dumbed-down demo. Saturday morning will be my first chance to actually touch the full version of the game, and I tend to be slow with things when I'm first picking them up. We're not going to have time to go slow this time, however.

From what we've researched, you usually want to have a solid design ready to go within an hour of start for a 48-hour Game Jam. We've got half that total time, so... we're going to have to pull a concept out of our asses fast and go way outside my usual method of "play with ideas, sleep on it, take notes, tweak" when it comes to making games. On top of this we've got to make the game according to a "mystery theme" that will be announced that morning. Woo, good times.

I'm so very excited, this will be my first opportunity to work with actual artists and... sound people(?) on a game. This will be fantastic for my portfolio. It will push me to my very limits.

On the other hand, I'm so very nervous. John's technically the leader of the team, though he's acting remotely and I'll be the go-between for design to the other "departments" and that's scary. I'm hoping this all goes well and I don't make too huge a fool of myself.

But in the end, no matter what happens... I'll get a $119 program free, and it'll be a good learning experience. I hope.

Aug. 11th, 2012

baby

Moved

We're finally here, set up, and starting to settle in. Still have loads of unpacking and organizing to do, things to take care of, and sleep to catch up on, as well as a new area to acquaint ourselves with, but things have settled down enough at this point that I can make a post.

We all absolutely love Orlando. The area is really nice, with the biggest shopping center I've ever seen just down the road and around the corner, close enough that it's super convenient but far enough that it's not an eyesore or an annoyance. The apartment complex itself is gorgeous, and the apartments are really nice, way nicer than any place I've ever lived before. I feel a little depressed moving our shitty secondhand furniture in such a nice place, but eh. Someday I'll have money and then I'll have nice things... or something. School is very close, about a twenty minute drive thanks to traffic and lights. The campus itself is incredible, just as beautiful and impressive as the pictures make it seem. I've driven there, and around, but haven't gotten out of the car because I'm too self-conscious. But it's incredible!

Pictures here!Collapse )

Jul. 17th, 2012

baby

Kassie's first 4th of July

Just because I haven't posted a picture recently, here's the kiddo in her cute 4th of July dress. The lighting is strange since it was at night (we were seeing fireworks) and I used the flash, but at least she looks like a very cute alien baby. And Alex's stupid foot.

Jul. 16th, 2012

baby

And Stuff

This withdrawal thing sucks. A lot.

It hadn't been too-too bad, the aches, the pains, the feeling crummy. Had my appointment earlier in the month and talked to the endo, he said it was, indeed, withdrawal. Told me that when I start to feel better I can drop my hydrocortisone dose again. I asked if I could do it anyway. He looked surprised, but said yes, though the symptoms will probably get worse. I did it. I want this overwith sooner, rather than later.

Things did indeed get worse, going from owwies to "oh god, this reminds me of pre-op" bad to "oh god this is worse than pre-op!" Developed a wicked headache that just wouldn't go away, which has gotten increasingly worse as the days go on. It's been getting to the point where it makes me feel sick. Yesterday I thought I'd end up puking.

Today I woke up and actually did.

All this on top of school, taking care of my almost-one-year-old, planning out said almost-one-year-old's birthday party, and preparing to move several states to the south. Life is truly an interesting beast.

On the bright side, I've lost close to 20lbs.

Granted, it's not as fast as I would've liked, but it's in the ballpark of about 10lbs a month, which is supposed to be fairly healthy, so I guess I can't complain too much.

Jun. 21st, 2012

baby

STOP. You must not hop on Pop!

I don't know what the title of this post is all about, it's just the first thing that came to mind.

So, things are hectic around here. I'm starting to feel better... though every time I really do feel better I lower my meds, which starts the whole cycle of feeling not-better again. It sucks, but I might as well get the weaning thing over and done with.

School is the bane of my existence right now. This month has been extremely rough, and this teacher has been a serious bitch, which hasn't helped matters. I know I'm not going to do well in this class, and at this point I frankly don't care. I just want it overwith. Blar.

In other news... we're moving. Beginning of August. To Orlando. Long story. I'll get on that when... I'm not so tired.

But yes, that's the state of things right now.

Jun. 2nd, 2012

baby

BLA - Home

I am officially adrenal-less.

So, Tuesday we went to Baltimore. Uneventful, the weather wasn't super nice and it was dark, but eh. We made it. Early Wednesday morning my mom and I headed to the hospital, letting Alex and the baby at the hotel. Things were pretty typical, we checked in, went through all the pre-surgery stuff, they got to work dehumanizing me (gowns, TED socks, IVs, hair net) carted me off to the room of Knocking You The Fuck Out, and then the whole, "You're doing great, just breathe in this oxygen and relax and we're injecting you with this now and you're going to feel sleepy..."

Then you wake up. And the pain begins.

First off, let me just say that medically I'm doing very well. Surgery went smoothly and I'm right on track as far as healing.

That said. I feel pretty shitty.

Abdominal surgery is a bitch. I remember this from when I had my gall bladder removed, you take for grated how much you use the muscles in your stomach area. A lot. But at least then it was mostly on one side of my body. This time around I have eight incisions total, four on each side, and that means that I can't really favor a side. It just hurts no matter what. Sitting up, laying down, turning, breathing, everything pulls the incisions and it's a whole lot of not fun. I like to think I have a pretty high pain tolerance - I've gone through some pretty painful procedures without anesthesia, I've given birth sans epidural, so on. I don't really see myself as a wuss when it comes to pain. And yet, we were just not getting anywhere quick as far as pain management went right after surgery. I was actually in the ICU for a full day just trying to get all that under control. I haven't actually gone back and thought about the past few days, but sitting here replaying it in my head actually makes me twitchy and upset. I've been through some pretty painful shit, but I think this tops it all. I said it while I was in the hospital and I'll say it now - I would rather go through labor all over again than have to do this again. No hesitation on that call.

Once I got out of the ICU they moved me another room for a day, made sure everything looked good, made sure I had the pain under control, and prepared to send me home. Sure enough, I was released the next day pretty early, before lunch even. One of the quickest hospital stays I've ever had, honestly, which is funny since this is easily the most serious of my surgeries. We ended up staying in Baltimore in the hotel for another night, just to be on the safe side in case anything should happen, but all was well and we came home today.

The incision stuff is painful, and irritating, and I'll be glad once that heals and I'm not hobbling all over the place and gasping for breath. Already the steroids I'm on are wrecking their havoc upon my body. I switch pretty violently from being freezing cold to ridiculously hot, and there's a few other things I suspect are also side-effects - appetite changes, emotional stuff, skin changes... Hopefully this stuff will get straightened out soon.

At this point my only real concern is that I'm getting headaches. One of the things that can happen post-BLA (bilateral adrenalectomy) is something called Nelson's Syndrome, where suddenly the pituitary tumor (which secretes ACTH, which stimulates the adrenals to produce cortisol - if the adrenals aren't there, no cortisol can be produced, and thus the ACTH-secreting tumor can be ignored... in theory) starts growing out of control. Prior to surgery it was so small it couldn't even be seen on an MRI, but there's the chance of it suddenly going nuts and growing. While I don't have to worry about the ACTH, if it gets too big it can cause vision/brain problems, which, obviously, isn't good. So, that said, I've been having headaches and that makes me a little nervous. But at this point it could be anything... so we can't really jump to conclusions until I'm healed and I start to wean off the stress doses of steroids I'm on.

But anyways, that's the current state of things. I'll do more when I'm not so hurty/tired.

May. 15th, 2012

baby

Words and numbers make my head hurt!

Ugh. Things have been... rough. Mother's Day was fun, but it wiped me. I have been utterly, utterly wiped. Like, to the point of being unable to even convince myself to get off my fat ass and move across the room. So tired.

This week is going to be a nightmare to get through. Tomorrow I've got Kassie's 9-month doctor's appointment, Wednesday I have a Wimba classroom session (in the evening), Thursday I need to get up early (around 4am-ish) to get to Baltimore for my pre-op appointment, Friday my midterm project is due, Saturday I have a wedding to attend (which I am very much not looking forward to, but I'm sort of obligated - it's the wedding of my gradeschool best friend, and she came to my baby shower, so... I really should go). I have nothing to wear for the wedding, so I need to get on top of that promptly, I (obviously) need to find time to get my midterm project done (programming a very basic game in Unity), and since surgery is rapidly (even though the days seem to drag...) approaching, I need to get on top of things and get my medical alert thingie (bracelet? dog tag?) picked and ordered so I have it post-op.

On the last issue, been trying to pick something out - anything at this point, I can always get something pretty later - and figure out how to do the wording. Most of the places offer about 19-20 characters, 4-5 lines. Trying to figure out what to get engraved is hard. The NADF (National Adrenal Disease Foundation) strongly suggests:

ADRENAL INSUFFICIENCY
NEEDS STRESS DOSE CORTICOSTEROIDS

That's all well and good, but after some research I want to put "no adrenals" on there, or something like that, just so they're aware that it's not your typical Secondary Adrenal Insufficiency. Those suckers ain't just being insufficient, they're gone. So many freaking big words!

Hm. Actually, upon thinking typing this out I think I've figured out what to put. I can always just add the more detailed stuff on the emergency wallet card thingie. That's actually quite helpful, hopefully I can get that ordered tomorrow. I think it takes 2-3 weeks to get finished, so I should have it shortly after surgery.

What a bloody week it's going to be. I had been hoping things would slow down the closer I got to surgery, so I could focus on organizing, getting things nailed down at home, and resting up. At this rate I'm going to be paddling like hell just to keep my head above water right up until they knock me out to go under the knife.

Cut for getting long and morbid and probably melodramatic. Don"t say I didn"t warn you.Collapse )

May. 7th, 2012

baby

Yup

Month from hell.

I thought the other week was stressful, what with cleaning and feeling like crap and school and baby. But at least I had some free time. Lately it feels like everything has just crashed on me at once. I shouldn't even be writing this post right now, but I'm so jittery and in a tizzy that I thought it might be good to take a few minutes out and write stuff down to at least get my head sorted out.

House is sort of sorted out, have the baby's room to organize again and the bathroom is a mess. Been putting off both because I'm tired and they'll be a lot of work - the bathroom especially, so much actual scrubbing and such, it's going to hurt. Managing my energy/pain levels has been extremely tedious lately, and with the workload I've got for school it's harder than ever. Programming Foundations is basically doing scripting stuff, using Unity, and to be quite honest I love it. I could sit down and mess with it for hours, given the chance. But I don't have the chance, and sadly it requires a lot of thinking (gee, programming requiring thinking?) and my head is often so foggy that I take twice the time I should to get anything done. If I can at all. It's pretty depressing, because I really want to get good at it (and it's going to be vital for me to know later down the road) but I just really can't right now. I try, but it's mostly just minimum at this point.

But anyway, things have come crashing down and I don't have time to do much of anything outside from the immediate things required - taking care of the baby first, and then school. Which means I don't have time to keep OMG RIGHT ON TOP OF THINGS as far as cleaning goes. And heaven fucking forbid anybody else in the house (which narrows it down pretty fast, seeing as there's three people, including myself and the baby) bother to clean up after themselves or take care of what needs done. I know, I'm complaining, and I've been doing it a lot lately. He's a wonderful guy and I love him and yadda yadda yadda, but DAMNIT, men can be so self-centered sometimes. So, yes.

So, the house is a wreck and I'm exhausted beyond belief, and have mountains of scripting to write and a baby to take care of and not this Thursday but next Thursday I have my pre-op visit and then the end of the month I have surgery.

I wish I had the money for a housekeeper for a month.

I wish I had money.

Scratch all that, I wish I had energy and no pain so I could just do it all myself and none of it would be an issue.

CRAP. I need to order a medical alert bracelet/necklace/something! Keep forgetting!

So much to do. So little time. But so tired of waiting.

Sigh.

Apr. 26th, 2012

baby

(no subject)

This is going to sound awful. Like, really awful. I know that. But... like the rest of my journal, I want to remember this. It's important to remember this stuff, in as much detail as possible, so I can appreciate life. After all this is over (or as over as it will ever be) I want to be able to look back and say to myself, "Wow, things aren't THAT bad. I sure have it great now. I love my life."

I love my life right now, actually. Mostly. I love my family, I love school.

But I'm so tired. I'm tired of the constant pain, the fight to function on a daily basis. I'm tired of being tired.

When I was younger I had suicidal thoughts because I thought my life sucked, and I didn't want to live it anymore.

Now I have suicidal thoughts because I love my life, rough stuff and all, but I'm so sick of what a fight it's become.

For all the stresses of being a mom, a student, an adult - financial woes, debt, child-rearing, grades, internships, jobs, all that - I'm happy. That stuff is normal. Everybody deals with it. No, it might not exactly be fun, but it's life. It's what tells you you're alive, you're doing things, you're experiencing things, you're growing and changing and learning.

I try to stay positive. What's the point of being negative? Some days it's so hard, though. I push, and push, and push just to function. I push every day until my body just gives out. Why not? People tell me to rest. If I did that all I would ever do is rest. And I won't ever really feel better. Even now, I'm half asleep. Even now, just typing hurts. But if I avoided it, then nothing would get done.

One more month. I can hang in there one more month. Stay positive, be happy, keep pushing.

Apr. 16th, 2012

baby

Just Because

I don't really have time to post, but I feel like bragging. Um. Is it bragging when it's not something you actually did? Whatever.

KASSIE OFFICIALLY HAS A TOOTH.

That is all.

Apr. 10th, 2012

baby

Nightmares

Life feels like an avalanche right now. Things are getting worse, and they're getting worse fast. I feel helpless. I feel frustrated and angry and sad. But there's really nothing I can do but wait.

Mentally I've pretty much clocked out at this point. I want to do my schoolwork, but between being exhausted, drugged, or just unmotivated it's really difficult. Finding moments of clarity is rare, and moments of clarity where I'm not busy taking care of Kassie are pretty much nonexistent. In general, the ratio of good periods and bad periods has tipped into the negative, and more often than not I'm just struggling not to lose control of my own head. I'm frustrated beyond belief with my own limitations, and it drives me nuts. Every hour of every day I have to fight with myself. There's so much I want to do, which makes me decide: Do I push myself beyond the pain, knowing I'll pay for it later? Do I rely on the drugs to dampen the pain, keep me down and passive so I don't make things worse? I'm running out of ways to distract myself, and I'm not sure how I'm going to make it to the end of May. The idea that even post-surgery I won't be finished with this only makes everything worse, so I try not to think about it.

Physically I'm run down, but still able to function on some level. I can take care of Kassie, mostly, and that about uses up my energy reserves each day. I feel horrible about it, like the worst mom ever. There's so much I'd like to be doing with her, and for her, yet even the basics kick my ass. Holding her just a bit each day strains enough muscles in my arms and neck and chest that I wake up each morning aching, and having trouble breathing. It feels like I've hit the gym, and yet all I've been doing is holding my baby. My hand and wrists throb constantly, sometimes sharp and sometimes dull, but always. I can mostly ignore that, I'm used to it, but it makes typing a pain in the ass. But in this case typing is a distraction from my own head, so I can get past it.

Everything is blurring. It sounds pathetic, but the simplest things are so hard now, and I honestly think each day it gets worse. I keep thinking that if I take it easy, go slow, lay low for a few days I'll feel better. But I don't. "Taking it easy" means doing less and less. The less I do the more guilty and frustrated I feel, to the point where I break down mentally and push myself way further than I should. Which means I pay for it later, usually days after. I think the worst part is that nobody really can understand how this feels, how frustrating it is, how much it hurts, how hard even the little things are. I'm not saying that to sound whiny, I'm saying it because it's the truth. Things don't get left a mess because I'm tired, or in pain, or don't feel like being arsed to do it. Things get left because if I expend the energy to do the dishes now, I won't be able to do something else later - something like lift Kassie out of her crib when she wakes up.

I know, I know. Whine whine. I don't mean to sit and bitchfest, but I need someplace to vent about everything and this is my journal, after all. And I've learned over the years that keeping this stuff for myself makes me appreciate my life later. This is the third time I've done this, and I can honestly say that nothing else is as bad as feeling your body shut down on you. It's something to remember. Despite all difficulties, I want to be able to look back on this and appreciate the days I'm not in constant pain, not constantly drugged, not struggling to have a mental breakdown every hour of every day. I had it before, I'll have it again. And I never, never want to take it for granted.

Apr. 4th, 2012

baby

Ohai Gaiz

Ohai gaiz, long time no yammer!

Cut for whining, baby talk, and pictures.Collapse )

Mar. 2nd, 2012

baby

Begin the Countdown

Monday after discussing the options with the endocrinologist I sat down with family and we discussed things more seriously one and for all. At that point we had already pretty much talked things through, but that was more a hypothetical, "I'm not sure what he'll say, but if it comes down to it..." sort of thing. This time it was for real. Didn't take long to come to a conclusion, though - as I've said before, I'm aware of the risks and negatives to the adrenalectomy, but at this point it's sort of the lesser of the evils.

So Wednesday I made the final call and sent a note to the endocrinologist letting him know, and asking where to go from there. No word from him that evening, no word from him Thursday.

Today I was just beginning to wake up from my nap and my phone rang. I looked at the number and it was Maryland - Johns-Hopkins. Upon answering I was informed that the doctor had gone over my records and I was okayed for surgery, March 22nd if that worked for me.

Long story short, March 22nd it is. I've spent a large part of the day reassuring Alex and my mom that no, this is not the end of the world and no, they won't come home from work and find that I've dropped dead while they were away. Of course, the whole, "Don't worry guys! Worst case scenario is that I'll be unconscious!" thing isn't particularly comforting, so I've been trying to play that part down.

Been looking around at medical alert jewelry and debating between the bracelets and the necklaces. I'm not a big bracelet-wearer most of the time, even though there are definitely some very pretty ones. I kinda think I might go with a necklace/dog tag type dealie, just because it's something I could wear all the time and not have to think about it. Decisions, decisions...

Feb. 27th, 2012

baby

ANSWERS

Finally.

I just got off the phone with the endocrinologist, who agreed to sit down (or call) and discuss my options as far as moving forward with my irritatingly recurrent Cushing's. I'm so happy I could run around the building yelling about it. Okay, no I couldn't, that actually sounds exhausting and painful. But the point is, I'm really happy. I finally have answers, options, and decisions to make.

So... the options aren't great, and the decisions pretty much consist of, "So, you're tired of Cushing's? Understandable! Which medical condition would you like to replace it with? Take your pick!" And that sort of sucks. But in my mind there are slightly more tolerable options and at least I'm getting the opportunity to pick which I want to deal with. Here's what was discussed:

1. Repeat pituitary surgery. The pro, it could finally be successful and I could be cured of Cushing's forever. There's about a 30% chance of that happening at this rate. Now for the cons. It could be unsuccessful (again) and I would be faced with doing this all over. Potentially again, and again, and again. Each surgery decreases the chance of success, and increases the chance of doing permanent damage to my pituitary - which regulates all hormones in the body, including cortisol, estrogen, and thyroid. In other words, the pituitary gets messed up and I'm on medication forever. (Watch - this whole "medication forever" thing becomes a theme.)

2. Radiation. The pro, it could be successful and I'd be cured of Cushing's forever. There's about a 60% chance of this happening. The cons are the fact that it can take years before this actually kicks in, I'd be on medication until it does, and, y'know, the fact that I could be waiting years for it to kick in and it never would. Oh, and I'd have to go off the medication once or twice a year to check and see if it's kicked in yet.

3. Medication. The pro... um. Well. It manages Cushing's. Kinda. To be perfectly honest this is probably the most suck of the options, since it's more like a band-aid than a real cure. It works for some people, it doesn't work for others. The cons are pretty much that. Sit around on medication forever, keeping it carefully regulated, hoping something better comes along. But I suppose this is the least risky way of dealing with it, so there's that I guess.

4. Adrenalectomy - This is another surgery, but a pretty final one. They go in and remove both adrenal glands. The pro to this is that it's a 100% cure, immediately. The major con is that it's pretty much going from one disease to another. Cushing's to Addison's. Once again, it would be medication for the rest of my life, but only to replace the cortisol. I'd need a medical alert bracelet, I'd need to carry around emergency shots, and I'd have to be careful about adjusting my meds if I get sick or whatever.


At this point it's looking like we're going to opt for the adrenalectomy, or at least that's what I hope to be able to do. Yes, it won't be easy. But it's the most reliable and final thing at this point. I've educated myself on what all it will entail, and frankly it seems like the best way to get my life back in some amount of order.

And, I've officially lost my train of thought now, so I'm going to leave it at this and come back later.

Feb. 22nd, 2012

baby

It's amazing how...

...the stupidest things make me happy.

I have been immensely depressed lately. Not trying to be, but really struggling to pull myself out of it. I'd had things planned to do today, and I got a few of them done, but once Alex got home from work I sort of said "fuck it" to everything and then proceeded to do nothing but draw ponies for the rest of the evening. Yes, ponies, like My Little Pony: Friendship is Magic, since I have this unnatural obsession with it. It's just so good and makes me feel so happy inside despite all the shit going on in my life right now. I paused briefly to feed the baby, play with her, then get her to bed and, despite having other things I probably should have been doing, went right back to drawing ponies. I now have myself, my family, and several friends (and their kids) as ponies. I'm not even very good at it. But oh man, I feel so much happier than I've felt in a long time, and there's absolutely no reason for it aside from the fact that I've been drawing ponies for the past couple of hours. Is that sad? Maybe. But y'know what? I don't care. It's the little things in life, man. The little things.

I'm really not sure why I felt like posting this in the first place, it's absolutely pointless. But I just needed to express my overwhelming joy and happiness over MLP, and the fact that I was able to ignore all the stress and depressing stuff and draw.

Oh god I love this show so much it's ridiculous...

Okay, I'm done now.

Feb. 17th, 2012

baby

Whirlwinds

Had an MRI done today. It was definitely one of my worst ones so far.

First of all they went though the whole list of, "Do you have any metal implants? Pre-existing conditions? Blah blah blah blah blah?" and then they got to the, "Chance of pregnancy?" No. "Breastfeeding?" ... Yes?

The girl stopped, stared. "You are?"

"Um, yes?"

"They didn't ask you that one on the phone?"

"...No...?"

"You're not supposed to breastfeed for 24 hours after the contrast." (Note: When getting the MRI done, at this in the pituitary scan case, they do the whole thing once regularly, then they pull you out and inject you with dye, then do it all again.)

"Oh. Well... I have milk stored, so I should be okay."

"Okay, if you're sure. They really should've told you that on the phone." Fuck yes they should have. Grr. I was just lucky I'd been stashing milk away previously, 'just in case' even though everybody thought I was a little weird for it. I mean, a bottle or three sure. I have bags and bags in the freezer. But I was afraid I'd be in the hospital, or forced on medication, or whatever. I'm playing it safe. Good thing, too, it would seem.

So then I go in for the MRI itself. My hair is moderately long dreads, a few inches past my shoulders and really, really thick as is the nature of dreads. When I lay down on the little table thing the girl asked if I could tuck my hair under my head so they could put on the head cage thing. Thing is, which I only realized later, my hair got tucked under so a lump of it was pressing into the back of my head... and hitting a nerve. Which proceeded to get worse and worse as the MRI progressed. OW.

I had the pressing in the back of my head making my eyes go all wonky and giving me a headache, then they put in the contrast which made me feel like I was going to hurk. Then, back into the tube for more pictures! I can't really explain just how miserable I was, and I like to think I have a pretty high pain tolerance (I mean, I did the patrosal sinus sampling thing sans painkiller, and had my kid sans painkiller, and do decently well with chronic pain sans painkiller) but it was bad.

In the end, when I got out of the scanner thing and got dressed I noticed that I'd broken out in a few hives thanks to the contrast. Never done that before, and when I mentioned it to my mom (who was on her way to work in the same building, so she stopped off to see me) she got concerned and suggested I tell them about it. I did, and apparently procedure dictates that they call a doctor to examine me, so they dragged a doctor over and he gave me Benadryl for it. Which, about an hour and a half later, kicked in and proceeded to whomp my ass. I dragged myself off to bed, passed out, and woke up about three hours later. Whee.

All in all, today was an absolute blast. And I mean that in the most sarcastic way possible. My poor kid is all in a funk because I can't nurse her thanks to my horribly poisoned milk, I feel crummy, blah blah blah.

Anyway, on the bright side I got a call at 6:45pm last night informing me that I had an appointment with Dr. Q (the surgeon) on Monday at 1:20pm. A bit last minute? Yes. But I'm glad. At least they're moving on this. I suspect my history with this stuff and the test results coming back slightly screwy is enough for them. So, at this point it seems official (no shit) that the tumor is back, the Cushing's is no longer in remission, and on Monday I'll hopefully be able to discuss what our options/course of action will be.

Feb. 13th, 2012

baby

More Stuff

Saturday I woke up trying to be positive, but feeling really... well, depressed. Combined with the increasing level of pain I've been having and I ended up having a fun little psychotic (did I mention that psychosis is actually a symptom of Cushing's?) episode. It was pretty much set off by the fact that my arms/shoulders/wrist got so bad I nearly dropped Kassie, which led to me getting depressed over the fact that couldn't take care of my own baby. So then I started thinking that the only way to solve the problem was to stop with the whole breastfeeding thing, so they'd let me have a stronger painkiller, but that idea depressed me further, which led to me not wanting to make the decision at all, and I just wanted to die. Then I thought about Kassie, decided I didn't want to die after all, got upset about not being able to take care of her... and it went round and round. I ended up laying in bed crying and doing that for about three hours straight, fighting with myself over whether or not things were really bad enough for me to want to die and, if they were, how I would go about it.

Yeah, yeah. I know. It sounds immensely emo. It's not me at all, honestly, all things considered I'm very happy with my life. But at the moment it was bad, and that just goes to prove how messed up even a perfectly stable person's head can get thanks to fucking hormones. I honestly have not been that nuts since highschool and it was terrifying.

Ended up calling my mom in tears, she flipped, wanted to take me to the ER. The problem with this sort of pain is that... it's invisible. Anybody who's had pain like that can tell you how frustrating it is. It's very much there and it can really mess you up... but the doctors can't actually see the cause of it at a glance. So rushing off to the ER crying about some sort of invisible agonizing pain and begging for something more than Aleve, Advil, or Tylenol (of which I had taken four, sixteen, and eight, respectively, already that day) isn't exactly my idea of fun. I sort of halfassedly explained this to my mom, she understood, and instead we phoned up the on-call doctor at my local office and he gave me enough Tylenol #3 for the weekend.

Come to today, and I promptly emailed the endocrinologist saying that I know the last test result isn't back, but asking if they had any thoughts on what we do have so far. Turns out the final test came back - abnormal - and so we're moving forward with baby steps once more. Tests, bloodwork and another 24-hour UFC, and an MRI.

Chug chug chug, sloooooowly...


In baby news, Kassie is six months old as of February 6th and had her 6-month appointment on the 9th. And... she is not helping the stress level right now. As of the appointment is is 24in, and 11lbs 10oz. The doctor says she's fallen off the growth charts entirely at this point, and is continuing to press the idea of formula supplementation. And, as always, I'm not exactly keen on that. I really, really, really want to avoid it. We are holding off a bit longer as we start to introduce proper solid foods to the kiddo.

While I'm all in a tizzy over her growth, the kid certainly seems healthy enough in every other way. She looks fine, she acts fine, and dear lord does she eat fine. I nurse her about five times a day, and two to three times a day I'll nurse her, then give her cereal and some of whatever food we're on at the moment. She wolfs down two or three tablespoons of "real" food and about a half of a cup (no freaking lie) of cereal in one sitting, and more often than not has a fit because she wants more. The child must be hollow, because I have no idea where else she'd be putting it.

As far as food goes, she's an absolute freaking pro. We've tried two foods so far, sweet potatoes first and most recently avocado. I'm aiming for foods that are especially nutritious for her first stuff, and the avocado in particular has a high fat content... so, while I know she's not actually getting a lot of nutrition from solid food at this point, I figure I might as well try for healthy stuff that stands a chance of helping her gain a little. And I'm excited that she actually seems to like the avocado better than the sweet potato, which surprised me. Next we're probably going to try squash, then peas. It was suggested that, if she shows interest, start trying bits of soft fruits and veggies as well and let her feed herself. She very much shows interest in food (she watches every time people around her are eating, tries to grab it for herself, and if you get it close to her mouth she opens wide) so I'm thinking I'll give it a go with maybe avocado chunks, or bananas once we give those a shot. Alex has a thing where he loves making her cereal really thick/chunky and she handles that without problems, so I think she'll get a kick out of feeding herself.

Man, baby stuff (aside from the whole, "OMG YOUR CHILD IS TOO SMALL" and "FAILURE TO THRIVE" plastered all over her charts) is a lot more fun to talk about than my own health issues.

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