transcended.net

Shit’s about to get real repetitive up in here.  I apologize in advance.  But this is what my brain is right now and I really need somewhere to puke it all up so I don’t drown between this rock and hard place in my mind.  

Oh, I know, I’m being a little over dramatic.  It’s not that serious right?  Or is it? 

I’m here on my day off, once again trying to figure out our vacation plans and semi-frozen by indecision and uncertainty.  I HATE living in limbo, I HATE not having a concrete plan.  Mostly I hate not knowing the future.  How dare God not give me the ability to see the future?  Ugh. 

T has been all about wanting a baby sister and then this morning he was like, actually I’d rather have a hamster.  I mean, he’s four, so sure why not, but I think on some level Paul and I have been thinking, okay we’ll try for a baby only because T seems to want a sibling.  But if he’d rather have a hamster, then what?!?  And yes, I realize we’re kind of fucked up for putting the decision on the whims of a four year old.  Maybe this is a sign we should not have any more kids after all.

But like, the idea of T going through his life without siblings, or even cousins his age is tough.  We’re trying to plan these vacations and it’s just SO HARD to coordinate with other families you know?  Everyone’s got their own lives and different things happening, and different limitations and what not.  We know some families with only one kiddo and ideally they’d be our vacation mates, but yeah, it’s just tough sometimes.  I keep regretting that we didn’t try harder like six months ago and maybe now we’d already be well on our way to a #2 that would be semi-close enough in age to be a playmate, but you know what?  I can’t do anything about that now so it’s really just needless self-flagellation at this point.  

Part of me feels like we should just shut it all down. Give away the baby stuff.  Forget about having two kids and move on with the family we already have now.  The family that really and truly is enough for us.  I honestly don’t know why the baby #2 question is still so friggin’ difficult when I know that I’m quite happy with what I have.  Is it greediness?  Is it some invisible societal peer pressure thing where you see people with 2+ kids everywhere so it feels like that’s what I’m supposed to aspire to?  What is it?  I can’t figure it out.  Maybe it’s just a primal evolutionary thing where your body is like, “Have some extras! Just in case!” 

I feel though, like my body, should really just shut the fuck up if that’s what it is though.  My body has not earned the right to demand that it carry more babies.  We just barely got through that last pregnancy by the skin of our teeth, and thank God everyone is here and okay, but truly the idea of being pregnant again kind of scares me.  I am five years older (FIVE YEARS OLDER – HOLY SHIT!) and I feel it.  Or at least, I think I do?  Maybe I’ve always been this exhausted, it’s hard to say now.  My blood pressure isn’t as good and my kidney function is poopier.  Let’s face it, I probably shouldn’t have another baby.

And yet, we still have that fucking crib upstairs.  We still have the infant car seat in the god damn garage.  We still have bottles in the cupboards and a whole fuckton of baby clothes packed away in the closets.  

Something about this is hard to let go of.  So we just haven’t.  

So here I am trying to plan out our vacations for the year (and next year) and it’s bringing up a lot of feelings.  Way more feelings than planning a vacation should ever elicit.  Most people are thinking about a few simple questions, when, where, how much will it cost?  

Me, on the other hand, vacation planning has devolved into an internal struggle about whether or not we should try to have another baby.  My thoughts on this are so jumbled, it will be hard to lay this out in such a way that it comes through as even semi-coherent, but I’ll give it a shot.

So. 

First thing, we are trying to plan a trip to Legoland.  T is four and a half now and he does love to play with us but I just know that everyone will have a better time if he has a playmate his own age to enjoy the park with, and it will be easier for us as parents with creaky knees and limited energy.  Cue guilt for not having a sibling for him like two years ago, when my body was all fucked up and in no position to carry a baby but when it would have given him a sibling in a window of time where they would be able to play with each other on trips like this.  Stupid fucking body, seriously fuck you. 

Then I start thinking, okay if we start trying now, and the truth is we have been “trying” for a few months now, except not really trying, just not not trying?  Anyway, nothing has happened so far and since we only had fun-time once at the veeeeeery beginning of my fertile window this past month, I’m not expecting anything interesting is happening in my uterus at the moment either (except that it’s about to shed it’s lining whee!).  But it’s like, dude, T is four and a half.  Even if I get pregnant next month our kids will be 5+yrs apart, and does that even help us at all with the playmate issue?  Because truthfully at this point, that’s kind of my main reason for wanting to have another baby.

It’s just not the same as when we were trying for T.  Before T every fiber of my being was determined that I would have a baby, I physically needed a baby.  I felt like my world and life would not be complete without one, I felt that from the depths of my heart.  

And now?  I feel pretty content most of the time.  T is my miracle. I feel beyond blessed that he is here, he is healthy, I made it through the pregnancy only slightly more damaged than I was before, and my life is pretty manageable.  We have a decent number of friends with kids his age and classmates who’s parents we enjoy spending time with so it’s not like a problem day to day.  The problem only comes up when I’m vacation planning.  Because then it’s just the three of us. And I think he feels it too because he’s started to ask, “Mommy, when will you make me a brother or sister?” He prefers a sister for the record (I think I would prefer another boy, so we’re not exactly on the same page with that – not that it’s in our control!).  Then I feel guilty.  I love my sister, I loved growing up with her and I love having her in my life now and I hate to think I could be depriving T of that kind of bond.  And I do think he would make an excellent big brother, so there’s that.

Anyway, I’ve been looking for Legoland buddies and trying to shove all that shit out of my head for the time being since Paul and I decided we will continue on half-assedly trying for the time being.  We are both just so ambivalent. I’m sure if we had another baby, we would love the heck out of the baby, but the thought of that first year of newborn/babyhood is daunting and terrifying.  Paying for two private school tuitions is probably not do-able.  Paying for a nanny is probably not exactly doable either but I don’t know.  

Okay, so that’s the Legoland existential crisis #1.  The bigger one is the trip we’re planning for next February to Hawaii.  We’re hoping to do five days of Maui & five days of Aulani.  So again, this would be easy if all we had to worry about were normal vacation logistics but here again, we’re attempting to coordinate the Aulani portion of the trip with a friend with a daughter so that T will have a buddy.  Fine, okay, not too bad there.  

BUT then it occurs to me, holy shit, what if this “not trying trying” leads to an actual pregnancy.  And then I have to start thinking about the actual real consequences of being pregnant and how it affects the ability to travel.  I know there’s a strong possibility that even if everything goes as well as it can, the end of any pregnancy will be…hairy…to say the least.  I won’t feel comfortable flying anywhere after 24w, esp since Maui has a super shitty hospital and Aulani is at least an hour out from the nearest hospital with a high level NICU.  Plus by 28 weeks I’ll be into the bi-weekly monitoring phase of the pregnancy and given how quickly T went from fine to not fine I’m not willing to skip 10 days of monitoring even if it is for Hawaii.  

So I guess I’ll just have to book everything, buy trip insurance and pray a lot.  But then this all brings me back to the original question that I’ve been trying to avoid.  

DO I EVEN WANT ANOTHER BABY?  I kind of feel like no I don’t.  And I feel horribly guilty for saying that because we’re still sort of trying and could get pregnant and then will the baby feel like I didn’t want it?  Because if it does come to exist I will obviously love it with every part of me right?  Literally Paul and I talk about this and neither of us really wants to close the door on it but neither of us are like YES WE TOTALLY WANT ANOTHER BABY!  But then I bring up chucking out the crib and all the baby shit we’ve been saving that’s taking up space in our cramped condo and we. Just. Can’t. A part of us just doesn’t want to let go I guess?  

Anyway, if you’ve made it this far, thank you for listening to all the whine.  You deserve a medal. 

I tried to post, I really did, and then the wordpress app got stuck publishing and ate my post and I really don’t feel like retyping it all out again so that’s that. We’ll try this again another day I guess.

Sometimes it feels like my life is nothing but a well-worn trough, the path always leading back to the same places, emotional ditches I’ve crashed into again and again. 
Emotional pit du jour? Work. Again.
I came back from my vacation all ready to go into the boss’s office and tell him/them all about the nightmare that my health has been for at least the past six months, but really this whole dang year, and talk to them about stepping back again. Of course, something unforeseen happened before I could do that which pretty much threw a giant wrench into my plans. Instead? I will be working more and not less. Because. Of. Course.  

I’m still trying to figure out how I’m supposed to feel about all this. I guess no one is expecting me to be happy, and I’m certainly not asking that of myself, but I want to at least be able to take it in stride and I feel like maybe I’m failing a little bit. I’m mostly fine but then something small will happen to remind me that everyone is looking out for just themselves at the end of the day and I fly into a small internal rage because I really want to be selfish too damnit. 

I came back from vacation all ready to say, hey this is for me and my health and because I’d like to not die anytime soon or end up on dialysis or some other life-altering medical event and because my company had a crises I end up shelving all that and saying I will be a good little soldier and suck it up and like, I don’t know, fingers crossed that my body can handle it? That seems really stupid when I put it that way. 

So I don’t know. Something has to give. I will do what I said and give working harder/more temporarily an honest shot. I have honestly been scared to get my labs drawn, and having never felt that way it’s, well, scary. I know I need to just suck it up and have them done. If my labs are bad and I’m having a flare of any sort well then at least it will be a solid reason to go back to the powers that be and tell them I’m sorry but I really can’t anymore. I have to put myself first now.

And this probably wouldn’t be the worst time to figure out a plan B either.

Once again it’s been awhile, and as always, I have no good excuses.  I should write more, I should be documenting T’s precious life as he grows up way, way too fast.  

But lately (always?) I have no energy for it.  I am stuck in this rut of not feeling good emotionally or physically, but also not so bad that I can’t function, just enough to function at a low level where I’m present but just kind of bad at every aspect of life.  

Basically since my last post in September I’ve had one illness after the other.  A bad upper respiratory infection that literally went on for six weeks and of course as I was about to get better, my little germ-infested monkey came home from preschool coughing up mucho phlegm.  And yup, I got that too.  And about two weeks ago that finally culminated in a raging ear infection and the crescendo – a ruptured right eardrum. 

Please imagine someone slow clapping here for a moment. 

The sheer pain of the ear infection sent me to an ENT immediately so I got all the good antibiotics and what not and am now on the road to recovery (I hope) and yet now I appear to have developed some kind of delayed reaction to the antibiotics (which I’ve already finished) causing me to break out into hives all over my face and legs and trunk.  

Spectacular!

Ugh. 

Being sick for so long has left me pretty emotional.  Luckily the lupus side of things has been somewhat quiet through all of this but it is not lost on me that spending eight weeks sick with a viral (and later bacterial) infection is likely one of those things that happens when you’re on immune suppressants.  It’s one of those things healthy (or healthy-ish) people just don’t get.  Everyone in my office has been treating me as though I’m doing something that’s making me stay sick for so long.  Well perhaps I am.  Perhaps this all goes back to lupus and my spoons after all.

Bear with me, I know this post has been disjointed and will likely continue to be but I know where I’m trying to go with all this.  I think.

A couple years ago my company asked me to give up my four day a week schedule and go back to full time – the caveat was that I would still have a fair amount of flexibility to take days off (beyond my allotted vacation days) and work a little bit of a later schedule (getting in at 6am – wow so late! /sarcasm).  Since then, as anyone could have predicted, my flexibility has been chipped away at.  I get in at 5-5:30am now on days when one of my partners is out, this is a fairly common occurrence since the people I work with travel quite often for work.  So there are a non-insignificant number of days now where I’m having to change my schedule to get in the office by 5:30 or earlier (sometimes 5am, and sometimes the god-awful 4:30am).  

The final straw came this past Friday though as I was prepping the office for my upcoming vacation.  My boss kept reiterating over and over again that the reason my “back up” situation this year has been weird is because I took more than my allotted vacation days and that that won’t be happening next year.  I couldn’t stop myself.  I had to speak up even though we were in front of others.  I mentioned that when I came back to working full time I was explicitly told I would have flexibility for days beyond my vacation days.  After a brief discussion with my boss I think I’ve come to the conclusion that I need to request a formal four day work week again.

Yes, it’s less money and yes it raises the likelihood of me being let go if there is another round of layoffs but I see the writing on the wall and if I let them, my company will push me into a situation where I’m burning through my reserve spoons every day, never have a real chance to build them back up again, and at some point I will just crash and burn.

I fucking hate having an invisible disease.  I really do.

I hate that the people in my office can’t see the limited number of spoons I have for every day and that I’m using way too many on dumb office stuff. That I need these spoons to LIVE, to try and have a good life that isn’t marred by pain and exhaustion and muddling through each day but to actually get to LIVE and experience life the way others do.

Sometimes it’s the smallest things that make you feel the most alone.  Like the fact that I have to worry about that sunny block up ahead because I don’t have my hat with me today, or maybe I do have my hat so I have to be sure and pull it out and put it on before the sunny patch.  

I hate how even my husband who has seen me so crippled from pain that I couldn’t move or do anything other than cry in bed doesn’t always seem to remember that I am not just a normal healthy person.  That I need to do everything in my power to never be back in that much pain again.  

This disease is really fucking isolating.  

If you are a real person with lupus reading this, I’d like to be your pen pal.  I need to talk to people who actually really get this and what it’s like to go through life hoarding spoons from jackasses who don’t even get why you need your spoons.  

Drop me a line would you?  Transcended77 at gmail

So I’m not even sure what my last update was but since it appears to have been back in May (?! Where has the time gone?) I’m guessing it is very out of date now.  

Allow me to catch you up in a nutshell: had a bunch of wonky test results that led to more and more tests, culminating with a renal angiogram that ultimately revealed no blockage and then my creatinine suddenly started falling back to normal levels on its own around that time.  My doctors (every last one of them) continues to make the “I’m baffled” face at me everytime we meet.  Fun stuff. 

But anyway the medical folks seem sufficiently happy with my current state of health and we’ve received the customary blessing from to go forth and try to procreate if we want.  Ah hah, finally I am sort of on equal footing to the “normal” population that doesn’t need medical sign off when it comes to family planning.  Of course, now that the decision is finally in our hands and only our hands, we seem to be a bit lost as to how to proceed.  

We are comfortable in our lives, sometimes stretched a bit too thin, the house gets messy, we’re always late and rushing….our favorite thing is to laze around the house all day together watching tv and taking naps.  Selfishly I think Pau and I are worried about us how another small human to care for would impact our day to day life.  How it affects our finances, schedules, everything.  

It just seems like a lot.  Children are a blessing of course but it might also just be selfish to bring another child into our lives knowing that it could significantly decrease the quality of life that T and we currently have.  

So it’s weird because we can try now and we’re not not trying but we are clearly incredibly ambivalent about this whole thing for now.  I’m sure if I actually do get pregnant I will be over the moon but until then…I guess I’m just kind of worried.  

It’s late and I have to get up extra early tomorrow.  But I can’t sleep and perhaps I just need to write this all down before the details start to slip from my less and less reliable memory. 

Where to begin.  So I suppose it all started months ago with some wonky serum creatinine levels that I thought were just a weird fluke that would go away.  All my other labs were great, just this one stubborn number, so my doctor kind of thought the same but he asked me to humor him while he ran some tests.  The renal ultrasound came back unimpressive.  But the creatinine which had been falling went back up again so he decided lets just try this other non-invasive test.  He said he didn’t expect anything to come of it but let’s just check it off the list.  

Well that’s not exactly how things went.  The test showed that my left kidney is behaving completely normal but the right one?  The right one is, shall we say, special.  And decidedly abnormal.  

So that all led up to today when I went to the office of a doctor I knew nothing about (not even really what kind of doctor he was) or exactly what test was being done on me there.  It turned out to be a blood flow ultrasound thing and it confirmed that there is something wrong with part of the artery in my right kidney.  What doesn’t make sense though is why is my blood pressure well controlled with meds, why aren’t I leaking any protein but why is my serum creatinine high?? People who have only one kidney can have normal creatinine numbers so if my left kidney is behaving like a healthy kidney then why would I have high creatinine levels just based off of one messed up kidney?  The doctor said he was wondering that too so he will take a picture of my left kidney as well just to make sure it really is looking as nice and normal as the other reports have claimed.  

 Anyway this all means I have to have a semi unpleasant follow up procedure that involves cameras in my arteries.  Which sounds scary as fuck.  And Paul has gone to bed and I am definitely having a panic moment over the shittiness that has just shitted on my life.  

I’m just so emotionally and mentally tired.  So.  Tired.  This. Health. Stuff. Just. Ugh. Blargh.

I just want to pretend to be a normal person with a normal life and normal worries for a little bit.  Not worry about medical procedures, mysterious kidney lab results and all the medical bills and figuring out how to plan my appointments while not getting fired.  

I hope that this is it, if this could somehow “fix” me for now then I would be okay with it.  But for some reason the lingering questions and the symptoms or lack thereof that don’t quite fit, make me worry that there is something else that everyone is missing and that this won’t be a fix at all.  

Sigh. 

I feel like I’ve been hiding in a shell lately.  I don’t really want to talk to people about how I’m doing or what’s going on in my life because I don’t really feel like I know.

I finally forced myself into making an appointment with my new MFM yesterday.  The only memory I really have of her is from the visit when my NST/BPPs started taking a bad turn.  I don’t like knowing that I won’t have my old MFM with me going through a second pregnancy if it happens.  I hope at least the nurses are the same since they were very sweet last time and held my hands when I cried and was waiting for Paul to get to the hospital.  

For some reason I started letting myself read stillbirth blogs again, which I stopped doing for a long time.  I don’t know why I do these things, it’s not as if I don’t already know pretty much every Bad Thing that can happen during pregnancy.  I’ve also come to the conclusion that you can’t really emotionally prepare yourself for something that awful either so it’s not like reading all this and crying over other people’s stories is going to somehow dull the heartache if Something Bad does happen.  

I figured out part of why I am so much more scared this time around.  It feels like I am testing fate, like I’ve gotten too big for my britches and the universe is going to be like, you think you can have THAT much happiness?  OH NO YOU DON’T.  Maybe I felt like the universe owed me T, this time feels like I’m being greedy.   But that’s not fair right?  Why does having two babies feel greedy to me when other people in my life can tell everyone they want four (after having just popped out #2) and not feel like greedy testers of fate?  

Stupid body.

So I changed meds over the weekend.  I don’t feel right.  I don’t know if it’s because of PMS or the med change or the weather or what.  I feel like my feet are retaining water but they aren’t, at least not visually or from touch.  My blood pressure has been up…I think…my cuff kind of sucks even though I just bought a new one and the readings never match what I get in the doctor’s office when I bring it in….so there’s that.  I should probably try to buy one that works before we start TTC right?  I just feel off.  And I feel bad because apparently even T has noticed it, Paul said he asked this morning as he was getting ready to go to daycare, “What’s wrong with mommy?”

That sound you just heard is my heart shattering for being such a crappy mommy to such a wonderful little person who deserves better.  Ugh.  Maybe I am greedy.

I don’t know.  I think I’m just really tired.  The idea of TTC#2 is exhausting.  The doctors, the lab work, the ultrasounds, the worrying, the NSTs, the BPPs….The way I see this working out if we are able to get pregnant again is me white knuckling it through the entire pregnancy…first worrying about a miscarriage, which oh by the way I found I’m homozygous or whatever for some MTHFR mutation so yay, gotta talk to the MFM about that now, where was I?  Oh yeah, being terrified the entire first trimester of miscarriage, spending the entire second trimester worried about preterm labor, and the entire third trimester worrying about stillbirth because of how shitty my placenta might be.  Oh and worrying about pre-e and IUGR.  And the NICU.  And if my baby is going to be okay.  I know that if we can get a healthy munchkin out of it, it won’t matter at all.  I don’t think back on my pregnancy with T and remember all that stuff for the most part, I just remember how cool it was to feel him kicking and hiccuping in me, how much I loved my pregnant belly, all the good stuff.  I really loved being pregnant, I did. 

But it feels like I climbed this huge mountain and it was so beautiful at the top and here I am again at the base of an even bigger mountain and I’m staring up at it and I just can’t even see the top.  I just wonder how I even make it, how I even get myself to start.  And I worry about whether or not I will make it to that beautiful summit or not and what I will lose along the way trying to get there. 

I think these are the moments that remind me why I need God in my life.  This is just all too big for me.  I’m not enough.  This is when I need Him to carry me.  I’ve been trying to wrap my head around all of this, to somehow figure it out on my own terms and it just occurred to me that that isn’t how I’ve made it through any of the other hard times.  Thinking about all of this has made me realize, I have to stop.  I can’t keep spinning this shit around in my head this way.  It’s not helping, it’s making me a crazy person, it’s probably hurting my health.  

I don’t know why it’s still so hard for me to remember I can lean on the Lord a  bit (or a lot) at times like these.  But let’s save discussion of that personal failing for another day, shall we?