where are all the updates lately? Its been a month!

Hey Anonymous, that's a fair question, so I figured that one deserved an honest answer. I've been somewhat busy for the last month, and I'll continue to be pretty busy for a while. Although "busy" is somewhat misleading. I've been asleep a good portion of the last couple of weeks, and before that, I was running back and forth to UCSF medical center, to see an oncologist, and my neurosurgeon. In May, I'll be back up there for a while, getting another open craniotomy, so they can remove another tumor from my brain. This one's quite a bit bigger than my original one, and there's talk about chemotherapy and radiation and all kinds of other fun things, including experimental treatment afterward, which *should* prevent another one from returning a third time, or so we all hope.

But that would by why there haven't been any postings, or any updates. When I got hope, I've been withdrawing from school, seeing some other doctors here, and then sleeping...a lot. To a certain amount it was just knowing what was going to be coming, and that sort of thing, and the rest is that the headaches have been getting worse, and it's been keeping me asleep more than awake. I get tired incredibly easily, and somewhat brain-foggy recently.

I know more this time, about how things will go when I wake up after surgery, so I'm keeping a journal, to tell me who I am, and to tell me the people I care about. Because I know they'll be working in the same region, it's a good chance, they'll erase the last six years, the same way they erased my earlier memories. Seemed prudent to give myself something to work with, when I wake up.

So, there you go, this is what's been going on with me...what's been going on with the rest of the Internet who follow my blog?

...and so it continues...

It isn't supposed to be like this, you see...things are supposed to be so much better now. And I want to cry, because they're not, and it seems so unfair, because they aren't perfect. My shiny, happy, easy time only lasted what seemed to have been such a brief moment. I knew I was playing the odds, I did. But waking up in the morning, full of energy and life, it was *so easy*, and it made me hope against hope that maybe it would continue to be that way.

I felt so alive, and so *good*. The sun didn't hurt me. Most of the major pain, it wasn't there. I kept hoping that was going to be normal...That maybe *I* was finally going to be normal.

I guess nothing lasts forever, huh?

They've diagnosed me, at long last, with Rheumatoid Arthritis, which isn't altogether surprising, when you figure in lupus and fibromyalgia. The lupus, as it turns out is very nearly completely in remission. But I'm going to be playing a round robin of new medications, and it's making me sick again. Plaquenil, which I've already started and is making me both dizzy and nauseous around the clock. Flexeril, which is making me sleepy as all hell, and I don't like at all. They want me on Methotrexate, which is a cancer/chemotherapy medication and if I can't talk the doctor out of it will simply make me yet more nauseous I'm sure, and since my Topamax already makes my birth control unstable, Methotrexate is incredibly dangerous for me to take. Methotrexate causes both birth defects and/or spontaneous abortion in women. It's *not* a good drug for any woman who is fertile to be on, which is why my neurologist doesn't want me taking it, but the rheumatologist knows that he's put patients on that mix before with no problems. My instinct tells me all his patients who take the mix have been either past child-bearing age, or male. In both those cases, it wouldn't be a problem...*sigh*.

And the really sad part is, because of all the stress, I just get more and more tired and more depressed day by day. All I want to do is sleep, and not have to deal with any of it. And I'd been feeling so good, and now I just want to give up again. Why can't I just wake up one morning, half the size I am now, and healthy? Is that too much to ask, to be normal, and healthy?

I got into it about my weight with someone recently, because his 'opinion' was that it should be pretty simple. I have two options as he sees it. I can either eat less, and exercise more, that's pretty simple, right? Or I can go and have the weight loss surgery, and take care of my problem that way. Either way would solve my problem.

The trouble is that I actually do eat pretty healthy, and I do exercise. Yes, I could probably do a little more than I do, but overall? I do not spend my days laying on my bed eating ice cream and potato chips, and drinking Pepsi, while having someone hand me junk food and watching soap operas. I get up and get what I want to eat, and I exercise. I take care of myself.

So I fear, greatly, that if I have weight loss surgery...what if it doesn't work, because I actually *am* already eating healthy, and it won't do me any good? If it cuts my calories down, but because I've already *done* that, it isn't going to do that awesome result that so many heavy people get? Then what? I've let someone do surgery on me, for no end result?

And being told by someone who doesn't actually have a weight problem, *and* who hasn't got physical restrictions limiting him from doing more exercise, and who can eat anything he wants, and does, majorly hurt me. Because it made me feel awful, about myself, and about everything I've done to get to where I am now. And as someone who couldn't walk from the living room to the car, I know what a major fucking deal it is, the fact that I can walk to anywhere I want to go. I might not get there very fast, but I can get there.

I own two canes, and I actually still *need* to use them, sometimes. They aren't here for decoration, or as toys because I just want them for my personal entertainment. That's what 'disabled' means. It means that it sucks to be me, and I have to cope with that, even when it isn't convenient. It means that some days, I'm going to be dizzy, and unbalanced, and whether I like it or not? Whether I'm heavy or skinny? I'm still going to need a cane. Because that's just how it is.

And I wonder sometimes, if he thinks that my losing weight is some kind of choice, and that if I really wanted to, I could just...write out a little plan, and hang it on the wall, and follow it, and it would just fall into line. That weight loss works that way, in some kind of "I want it this way, and if I would just have enough determination, then I'd be thin" sort of reasoning.

If it was that simple, I'd weigh about a hundred and fifteen pounds. I have determination in spades, what I don't have is a body that cooperates, and actually does what it seems as though it would logically do, in spite of what I put in, or take out, or exercise, or anything else. I can eat 600 calories a day. I can eat 2600 calories a day. I can, and have, followed x, y, z diets, to the letter, and the end result is still the same, every time. My weight doesn't move. I just don't know why :(

And now I'm more depressed than I was when I started writing this. I was rather hoping that the process of writing it was going to make me feel somewhat better, for working it out in my head, but it doesn't seem to have. So I'm going to go, and work on my never-ending homework, and then read a novel, where make-believe people solve make-believe problems, in some other world, that isn't mine, until I fall asleep.

Goodnight, internets. I hope that someone, somewhere is having a better night than I am.

Whacking and chainsaws

Are kind of ruining my peace and quiet. Thus, earplugs FTW. So I hope no one tries to call, as I had to put earplugs in, because I would otherwise not be able to hear myself think, and I like being able to hear myself think.

There's massive construction/repairs going on at my apartment complex, which is nice, because it means that the property owners care enough to make sure the place is maintained, but bad insofar as that it's very noisy, getting it accomplished. Chainsaws are very loud. So is hammering. And other such construction related noises.

And it's landscaping day, so they're running their power equipment as well, and so it's just very noisy out there. And so I'll hide in earplugs until they're finished, as I'm already brewing one hell of a headache, which I'm kind of hoping to head off.

My entire day got a little bit blown to hell as it is, which I'm not thrilled about, but there isn't much I can do about, and I'm going to end up spending the better part of tomorrow with yet another batch of doctors, clinicians, and techs doing various exams, which was the plan for today, except that *someone* didn't send the correct referral forms. AGAIN.

Mental note to myself to call in advance and make sure they have all the damn paperwork. So one of the ultrasounds got done. Some lab work got done. Some prescriptions were written. And all the rest of it will get done tomorrow. Fucking yay.

I need to take the Thunderbird in and get it checked over by a mechanic, as it seems that the engine mounts may need to be tightened down. No idea how much that's going to run me. And I'm due for brakes, and an oil change, among other things. Always something, right? But I can't afford to let my car fall into disrepair, so I'll take care of it as soon as I can.

And I'm not feeling so hot lately, as evidenced by Brody watching one of my spinny episodes earlier today, which I think is kind of rattling her cage. She got to see one of my lupus flares in living colour a few weeks ago, which is kind of disconcerting, if you aren't expected it. Watching my skin kind of start blistering in front of you is sort of unnerving when it happens in seconds flat. We threw a towel across my arms, got her home, and I headed directly home to stay out of the sun. But I think it shocked her. Hearing me say that my skin blisters, and watching a blister form that quickly just aren't quite the same, and I always forget how creepy it can be.

I think that my meds are going to be tinkered about with this new batch of bloodwork. OH OH OH! But on a fucking happy note, I ran all over hell and gone this morning, and when they did my blood pressure, right after all the jogging? That shit came in at 111/70. Dead on normal, which means that all the exercise I've been doing lately is actually making me more the healthy, because generally if I get over-exerted, when they pop the cuff on me, it runs at least a little high, until I've been sitting for a few minutes. That's apparently not the case anymore. I was rather pleased by that. So yay for me, and my bouncy-bouncy-bouncy.

I finally have a quasi-goal in mind for myself, for what I want to be when I grow...down? LOL. That sounded funny even to me. I have this kind of strange ghosty picture in my mind, of an outfit I vaguely remember as being one of my favourites when I was 16-17 years old. And that outfit is something I saw on someone else recently, who is my height, and my body frame, but much lighter than I am. She's not stick-thin, but she had what I'm shooting for. And it suddenly dawned on me that she was dressed in clothes I would have worn once upon a time. And then I realized what weight range I'll need to be in, to look like that. And I was content then, because now I can has a goal. It's a vague, misty goal, to be sure. But it's a goal, and that made me happy. So I'll putter along, in ten pound increments, and perhaps I'll someday achieve my goal, and then I'll go buy a bodysuit, and see if I look like the Crystal I remember.

That might be nice. Looking at me in the mirror, and seeing the Crystal I remember looking back at me...having that confidence back would be good. I don't want to be that angry, angsty girl. But I sure would like her body back :)

Okay, I'm going to have to go take something for this headache, and maybe make some tea.

medical things

I'm going to do a medical update for right now, that will be updated again in a couple of weeks when I go in for a full evaluation with my doctors, and get a series of bloodwork and new MRI and ultrasounds done. But for right now, this is more or less what's going on:

I'm having headaches again, and sometimes they're migraines, and sometimes they're just headaches. I'll be having them checked out by my neurologist when I go see him, and until that time there isn't anything I can do about it but handle things as best I can, so I haven't been mentioning it overmuch to anybody, and I'll continue going about my day-to-day routine until I can get some sort of answers from him.

My weight is still dropping, and I'm incorporating some other exercise routines in, because I need to vary things now, or I'm afraid it's going to come to a standstill, although I think I'll be okay with it if I do stall out at this point, because I actually feel better now than I have in years physically, and so I'm not going to complain if my weight remains where I am. I'm shocked at where I am, and can't really complain too much about how things stand right now. I'd be delighted to have more come off, but at the same time, am very pleased with things the way they are.

My lupus flares are getting worse, although for those of you who have seen me recently, obviously the makeup that I'm wearing is hiding the most visible of the rashes across my face, because no one has commented on it to me. Thanks, because I was very worried about it being visible. I'll be having my medications tweaked the next time I'm in with the doctors, I suspect my dosages need to be adjusted, because the flares are getting more frequent, as I was holding steady for quite a while, and that it's getting worse now doesn't necessarily bode evil, it simply means that I need to have my bloodwork checked, and see if things need to be upped.

My fibromyalgia is getting worse. There's no way around it, and I'm going to be adapting as best I can. The more weight I lose, the worse it's going to be. Unfortunately for me, the better my range of motion, and the better I move, the more pain I'm going to be in, and I refuse to take more pain medication, simply because it interferes too much with my lupus meds. So I'm trying to find middle ground, and it's difficult. I'm adjusting. I don't know what else I can do.

I was warned that because of my hip injury, and the fact that I refused surgery to fuse it, that between that injury and my FM, I was in for hell if I ever dropped a substantial amount of weight, and that has proven true. The chronic fatigue and the FM together, are doing quite a number on me, and I'm battling it back, because there are too many other things I want to be doing, and I refuse to give in. I'm stubborn that way.

It seems that for right now, I have my immune system holding more or less steady, which is a good thing. While I was in Bakersfield a couple of weeks ago visiting Shawn & Sissa, everyone else *except* me managed to get sick, so obviously I'm actually doing reasonably well for a change in that regard. I'm still taking the supplements, and boosters, to keep everything running, and they're doing their job.

I've been religiously taking the hormones to try and shrink down the cysts in my left ovary, and I won't know until they run the next ultrasound whether or not it's working, but I haven't missed taking anything that was prescribed to me, so I'm cautiously hopeful. I haven't decided yet what I'm going to do if it doesn't work. I'll know more in about three weeks.

They'll be checking out my liver again then, as well, along with running more tests to check all the levels and make sure that the mass doses of hormones aren't sending everything completely out of whack that way. I can only imagine the amount of blood they'll be taking when I go in this time. My "normal" pull is nine vials. Wonder what they're going to want now?

I got a letter from my insurance company, telling me that I've now gone into what's known as "catastrophic coverage", which tells me that from now until the end of the year, I no longer have to pay out the horrendous co-pays for out-of-pocket costs for my prescriptions, because I hit the limit. I didn't even know there was one, but evidently because of what my medications were costing to cover the therapies to treat the cysts, it bumped me into the next tier group, and so they're finally going to be paying for the hormones to help shrink the cysts, if they can be shrunk. That will help me out, a lot. I was grateful, once it sunk in what it all meant. And they tell me there's no limit on what the insurance will pay out through the end of the year. In January I have to start paying it myself again, but until then, they'll pick up the tab.

Yay? Yes, yay. I'm grateful, even if "catastrophic" sounds awful.

So those are my updates for right now, until I can get back some more concrete answers. That's what's going on with me right now.

All the freaking changes and a stupid migraine.

The amount of crap I've done and changed in the last couple of days has amazed even me. And it's not that they're bad changes, most of them are both productive and good. But they're still yet more changes. Comcast has gotten zee boot. Or at least, they'll have gotten the boot in another couple of days. I went with AT&T for the phone and for internet, and I killed the cable television entirely. Not like I ever turn the stupid thing on. I cut down services on both cell phones, (Danny you 'tard why on earth didn't you cut the text messaging down if the phone wasn't in use?), and I cut it down on my other one as well. Cut the Netflix account as well, I never have time to watch the movies. It's on hold, actually, in the hope that perhaps within three months I might have time to watch movies again at some point. If I don't have time again then, I'll cancel it outright.

Moved the furniture around. Again. Loaned the LCD television/5-disc changer and small surround sound system to Danny and Mona for a while, as again, I don't really have the time to watch anything, and they needed one for their room at his parent's house. He says I can have it back once he can save up enough to buy one for his room, which is fine, it isn't as though I'm using it right now.

I spent half a damned day on the phone with contractors, service people and Social Security and it's cohorts the other day, setting up various services, and letting people know that I'm working, planning out some things, and lining up assistance. I'm looking into going back to college as well, if I can get it lined up for online courses. School will also take a bit of pressure off me for work if I can get into the right programs with grant money. If everything lines up correctly. If, if, if. So sick of if, and maybe, and possibly.

So tired of jumping through hoops, and government programs, and difficulties. Wish I was normal, and things could be simpler. Wish I could work a normal job, and have a normal life.

Waiting on yet more blood lab results again. May yet have the world fall out from under me if some of that lab work comes back the wrong way, and I'm terrified, honestly about that. Not as terrified as some other people may end up being, but scared just the same.

Evidentally, the things that cause an enlarged liver? Are not things I knew anything about, and I'm not very pleased with what they were testing for, and if those tests come back positive, I'm going to be a lot less pleased yet.

We shall see. Waiting to hear back from the doctor's office now. At least if they come back and I'm sick with some of those things, it isn't going to be *me* calling around and doing the notifying of other parties. I'll be not-so-happily handing over the names and contact information to my doctor, to notify the health department, and they can handle that shit from there.

Danny and I were both completely sexually clean when we were with each other, so if I suddenly test positive for something that's made me sick? It didn't come from me, or from Danny. And with my already compromised immune system, treating me is going to be a massive bitch.

Meh, I got off-track. Back to changes, and all the stuff I've been doing this week. Oh yes, working my ass off, literally as it turns out. Hit the scale, and I'm down seventy one pounds, total, since October third of last year. That's quite a bit. And I'm kind of amused at myself, since I honestly haven't really done anything at all to have lost that, except not be eating anything except what I choose to eat by myself. Nobody to eat *with* anymore, and that seems to be the difference.

Guess that's good for me? But I'm pretty pleased with it. 'Chelle actually just gave me several pairs of jeans that are three sizes smaller, and I needed it, because those are once again bagging on me, and those are the ones that I couldn't get pulled *on* six months ago. I'm happy with my jeans.

I even allow pictures to be taken these days now, without yelling. It's kind of funny.

Okay, as I've got a rotten ass migraine, and I had to take some Imitrex, and I'm fairly stoned right now, I'm going to go and pass out for a couple of hours, and hope it passes so I can still work later tonight, because I need to.

Wish me luck.

Updates to my life

This is what's going on:

Trinette is completely moved out, and I'm working, more or less around the clock. Things are going alright there, it's busy, and it will take some getting used to. She is, as far as I know, settling in at her Mom's place, and she and I are doing fine. Still friends, all is quiet on the western front. Still not sure exactly how I'm going to manage July's rent, but I'm sure that will also get worked out, and it will be fine, and in August, I'll be managing on my own just fine.

All the results are formally back from all the various ultrasounds, not just the uterine one. And I'm not sure how I feel about them.

My kidneys are fine, my pancreas is fine, my heart is fine, my spleen, all fine.

My ovaries? Are not fine. One of them is missing entirely, my right ovary wasn't there. And I know that it was there originally when I had Dana, so sometime between now and then it stopped being there. And the exam that was done was done in two ways, so I know that the tech didn't just "miss" it. It was too thorough for her to miss it. The right ovary is simply gone. About five years ago, there was an issue, and Danny and I think that was when it became gone. I'll leave it at that.

The left ovary? There's a cyst inside of it, that's taking up virtually the entire thing. Chances are that that's why I've been pregnant twice in the last six months, and both times I couldn't sustain them. Chances are that the eggs that are releasing are so badly damaged at this point that they're not even capable of producing a healthy child. They're most likely not sustainable in any fashion that would result in a fully functional child. There's simply not enough space left in my left ovary to produce viable eggs, I don't think.

Which means, in basic English, that chances are it's about that time in my life that my reproductive organs are about to be pulled. If I only have one ovary to begin with, and they're going to take it out, they might as well take everything else too. And then there will be no more babies for me, ever. I've known that since I was about sixteen, that at some point I wouldn't be having all my female bits. But I guess I wasn't quite as well-prepared as I thought.

And I'm hurting. I feel rather like less than useless right now, as a woman in general. I couldn't sustain a baby that I wanted desperately, twice. I don't have Dana. I am just generally completely a failure in general as a mother. And it hurts like hell. And no, there's nothing anything anyone is going to be able to say that is going to take that feeling away and make it better right now. I know that it's not particularly a valid feeling, and I haven't done anything wrong to cause it. But it doesn't much change anything.

Oh, and yes, there are some gallstones, so score one for the doctor who wanted my gallbladder checked. I guess I'll get to take yet another weird pill to cause them to splinter into pieces or whatever. My liver is also enlarged, although they're not sure why. It could be that it's just naturally that way. It might be that the amount of medications I take caused it to become bigger, and it might be a danger to my health because of it. It might be a number of things. Who knows.

Yay for having completely fucked up health, right? Just once, just one time, I'd like to have normal health, and be a normal functional person. Is that too much to ask?

Apparently so.

And now, I'm going to go and play in the pervert pond again, because honestly that's more fun than thinking about anything, and I'd rather sit and entertain the perverts than live my own life right now.

If nobody hears from me for a while, assume that all I'm doing is working, and that I'm fine. I'll blog, and log in and out of MySpace and FaceBook. Don't worry about me.

Love, Crys

Peace and harmony in...

I probably should have gotten around to this earlier, but I was lagging. So much to do, so...well, I'd've said little time, but that was bogus. I was out most of yesterday and when I got home, I ended up watching Prince's "Purple Rain" in HD. Love it. Whee. Comcastic is still sucking nuts, so I still don't have stable internets, so bear with me peoples.

Updates from the doctors: my brain is ticking along just fine. I sent out a mass text to everybody who was in my cell when I came out of the office yesterday. Note to everybody: If you didn't get that text, it means I don't have your cell phone numbers, and you need to contact me and give them to me. I really did mass send that message. The gist of it was this: Seizures are going to stop. EEG results are in, and the cause *is* that the scarring from my resection is the only cause. The meds are working and should continue to do so, and I'll be a real person! He told me to come back in six months and tell him how I'm feeling. I can't even remember the last time a freaking doctor told me that.

I'm still freezing cold, because my body temperature's still having issues stabilizing. My wonder anti-seizure medication can only do so much. And you know what? I'm okay with that. Blankets FTW! Heh. I got to run all over town yesterday wearing a long sleeved shirt. It was awesome. About damned time. Summer-be-gone!

Today will be spent with Kat, for the most part. Danny's back at work for the only day this week. Heh. And then I can play with the wonderful, beautiful camera over the weekend. *SO* looking forward to that. Might even go out in public with it. To the park or wherever. Oh, the pretty pictures, how they speak to me. My pretties. Hehehehe. Yes, I am insane. We knew that.

I am still sort of walking around in a daze about those test results from yesterday. I just can't quite wrap my mind around the fact that it's going to be okay again. Really okay. Thing is, the "miracle pills" do a lot of things. I mean, they can't cook me breakfast...well, they don't really need to. But they're a mood stabilizer, which makes them more effective than the anti-depressants that I was on. I can laugh. I can cry. I can get angry, or sad, or happy...without the extreme roller-coaster I've been going on for the last I-honestly-can't-remember-how-long. And it's a visible difference, personality wise. Everyone who has spent time with me in the last few years, and has spent time with me in the last few *weeks* can visibly see the difference...And that difference is that the underlying misery isn't there. The anger just isn't there. And I like it. I like not hating everything. Had I known that there was a pill for that, I'd've been asking for it years and years ago. I didn't know that normal *was* an option.

I always knew there was something wrong, but I didn't really think it was a chemical something. I just figured it was something fundamentally wrong with me, and I had to deal.

Yay for chemical corrections!