transcended.net

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? 

I actually tried to post somethig just now and then wordpress ate it and I’m not prepared to attempt reconstruction so…til next time. 

Seriously, the worst right?  I’m not going to blame it on being busy, I just haven’t really had the itch to write.  Shrug.

So why am I here today?

Because I have stuff on my mind and no one to really talk to about it since it is a touchy subject…

Ever since the “Planned Parenthood sells baby parts” videos started coming out it seems like abortion has been, rightfully so, in the news a lot more.  This has made me think about it a lot more, and trust me it is not something I like to think about.

For someone as opinionated as me, I am frightfully unsure of how I feel about abortion.  I have a really hard time articulating my position, and c’mon that is just not normal for me!!

I guess the problem is that I can see both sides.  I really can.  There are certainly legitimate arguments and good intentions on both sides.  At the end of the day, though, it’s just tough, really, really tough to think of all the tiny, precious, human life being snuffed out in alarming numbers every single day.  I don’t care if your prolife or prochoice, that is just a really brutal thought.

You may never hear me say this again, but I agree with Bill Clinton that abortions should be safe, legal and rare.

Clearly, we’re missing out on the “rare” leg of that triangle since according to some 2011 numbers I found, more than 1 in 5 pregnancies in America (excluding miscarriages) ended in an abortion (40% of all unintended pregnancies ended in abortion).

Anyway, I’m not here to share my opinion on abortion since I’m still not even really sure I know what my opinion is yet…I’m here because all this thinking about abortion got me thinking about how abortion has affected my life.

No, I’ve luckily (and I do mean luckily) never had one, and I hope that I never am in a position where I have to make that decision.  (Please, God, I’m not sure I could handle it).

But my life has certainly been affected by one.

I am the oldest of two daughters, but I should have been the oldest of three.  I’m missing my youngest sibling and it wasn’t until recently that, that thought really hit me.  For some reason I imagine it was a boy, maybe because we were a family with two girls and I always wondered what it would be like to have a brother when I was growing up.

Now that I am an adult with my own child, it’s strange but yes, I actually feel a tangible loss.  I wonder how it would be to have another uncle or aunt to dote on T.  I wonder what our childhood together would have been like, the memories we could have made, the adventures we could have had.  I wonder what it would have been like to have a sibling so many years younger.  I wonder if he would have gone to UCLA and followed in my sister and my footsteps. I wonder, and I honestly miss him.  I miss the little brother I never got to meet but that I know existed.  It’s really sad.  And I see how abortion doesn’t just affect the mother’s life, there is a ripple effect sent through the entire family for generations.

Sometimes I want to ask my mom how she feels about it now.  Does she ever regret it?  Does she ever wonder what he would be like?  Does she imagine he was a boy too?  Does she imagine him at all?  But even though my mom and I are close and talk about almost anything, I can’t bring myself to bring it up.  I’m afraid it will be too hurtful a subject to dredge up.

So anyway, that’s why I’m here.  Thinking about my baby brother who never had the chance to grow up to be the man he was going to become and feeling pretty bummed about it.

An anniversary passed early this year, quietly, unnoticed.  Perhaps not one I was ready to think about at the time.

In early 2005 I was diagnosed with lupus nephritis.  For me the moment of my diagnosis is one of those that is seared into my mind, just as clear as the first moment I laid eyes on my son.

I remember the compassion in my doctor’s voice.  The reassurance to me that this was not a death sentence.  The alarm I felt at hearing the word “death” at all, since I knew literally nothing about lupus nephritis.  It was only later as I perused Google that I realized why he had said that.  Thirty years earlier, probably around the time my doctor had begun his practice, lupus nephritis would have been a death sentence.  The ten year mortality rate in the 1970’s and 1980’s was abysmal, below 50%.

Lucky for me, by the time of my diagnosis modern medicine had progressed to the point that here I am ten years later.  Not only alive, but married to a wonderful, supportive man, and with a beautiful young son I had the privilege of carrying inside my womb.  I have a thriving career, a lovely home in the heart of one of the most beautiful cities in the world, and so many plans for my future.

I am incredibly grateful for each and every day.  Beyond thankful for my miracle baby.  And oh so aware, that had I been born just a few decades earlier I would most likely not have had any of these things.  I would be dead, close to it, or at the very least, really, really sick.  The fact that I am none of these things, is a gift.

Hold on, is this really the life I’m living?
Cause I don’t feel like I deserve it
Every day that I wake, every breath that I take, You’ve given

So right here, right now, while the sun is shining down
I want to live like there’s no tomorrow
Love like I’m on borrowed time
It’s good to be alive

I won’t take it for granted
I won’t waste another second
All I want is to give You
A life well lived, to say “thank you”

– Good to be Alive by Jason Gray

 

And yet…

How can it be that I still want more?  I’m alive.  This is a miracle.  I have a son.  This is even more of a miracle.  But somehow something inside me still aches when I see the young mother holding her toddler’s hand as she rubs her large pregnant belly.  When I see siblings laughing and playing together.

How can it be that T is more than enough, more than I even had a right to hope for, but yet still I long for another baby.  It isn’t rationale.  But then, is a mother’s love ever rational?  The love a mother feels for her child is probably best described as primale, instinctive, all-encompassing and completely irrational at times.

So this is why I’ve come to the point where I’m torn between amazement and gratitude I feel at the privilege of being alive, of being a mother at all, and the impulse to gamble my health, possibly my life, for the chance to give my son a sibling.

It doesn’t feel fair.

But then I remember, it’s been ten years.  And here I am.  Alive.

Life’s not always fair, but God is always good.

So I’m trying my best to really leave this in His hands.  To pray.  But to also not let this consume me the way I know it could.

I feel strongly that God has led me through every step of my life.  He has carried me when I was too weak to walk on my own.  And I think maybe I’m there again, in a place where I need to let Him lead me.  Maybe I won’t like the answer, but I hope he can bring me to a place where I can accept the answer whatever it is.

And I hope that I can always remember, no matter the circumstances, to live a life well lived.