transcended.net

Note: I’m writing this quickly so that hopefully I will actually finish it and hit publish in one sitting.  Otherwise, it will likely end up in the blackhole known as the “drafts” folder.

1) I’m alive and 2) as expected, Hawaii was, well, Hawaii.  And by that, of course, I mean, it was totally amazing.  By the end of it, Paul and I were seriously weighing the potential net happiness we might be capturing living with less income IN Hawaii versus higher incomes but decidedly NOT Hawaii (not that where we live is so terrible, but, HAWAII!! Right?).

The cherry on top is that work has been slow, so the vacation glow lasted a bit longer than I would have expected it to.

But I’ve been back over two weeks now (so the glow is long gone).   And I’m not even sure where to begin.

And clearly the note at the beginning of this post was nothing but a big fat LIE since I’ve had to rewrite the preceding paragraph three four times now to accommodate the growing length of time between the present and our vacation.  Still I’m determined to publish this one. 

I saw my rheumy back in October and he, predictably, did not give me a pep talk about getting pregnant.  But he did say that it might be a good time to get more doctors involved again, because yay? The more doctors the merrier right?  (Please note that was dripping with sarcasm).  He wanted me to consult with someone he trusts at a prominent hospital he is affiliated with, but the thought of yet another doctor visit that requires driving through traffic at the worst possible times of day was a complete non-starter.  I went back to the doctor I saw last February, right before All Hell Broke Loose (better known as Summer 2010).

Part of me felt very…strange..being there.  I don’t know what it was exactly, something about being there.  Where I had been so hopeful.  When I left that office the last time I clearly thought the next time I came back, I’d be pregnant.   And yet I was not pregnant.  Not even close.  In fact, a bit further away than the last time I saw him.

I don’t think they are all that used to dealing with people like me either.  Women who come back for multiple pre-conception visits.  Because the receptionist seemed a bit confused (though she caught herself quickly and tried to hide it) that I had been there before and was back but not pregnant.

Anyway, to further freak me out (or maybe because I was freaked out) my bp was high, just like it was the last time I was there and we were like “meh, it’s just cause I’m at the doctor’s!” except that when I went home I kept checking and checking for days and it was Not Good every time.

But I have been taking my bp more regularly since then (it had been so good for awhile that I hadn’t bothered) and it seems fine.  To be safe I bumped the meds I had cut (without being advised) back up a bit….because….the high risk ob (once again) said if I could switch medications he didn’t a high risk for anything unmanageable.  In other words, from his point of view we can start trying two months after I switch medications.

I did immediately start calculating when that meant I could be pregnant in my head.  But also know that this doesn’t necessarily mean my other doctors (see? didn’t I tell you? fun!) won’t want to take more conservative approaches and wait 4-6months.

The high risk-ob did not feel like he should be the one to switch my meds so I asked him to refer me to a new kidney specialist in the city since I’m not especially attached to my current one who is an hour’s drive away.  I had my appointment with my new Dr. Kidney the day before Thanksgiving and really liked him but he also said he was not prepared to switch my meds without first discussing with the high-risk ob and my rheumy (who I do plan to keep seeing despite the distance – he has known me for 4+ yrs and I decided it’s best to stay with at least one doctor who is very familiar with my history).  Understandable since that was only my first time seeing him, but still disappointing.  I was hoping to be on a new med by now, but I suppose this is just one more thing I need to be patient about.  He was very open to the idea of me switching meds but said he thought it was the right thing to do to confer with my existing army of specialists.

I suppose this is normal (okay, so none of this is actually normal but you get what I mean) but as I get closer to (hopefully) the reality of being “cleared” to TTC (trying to conceive) the more nervous I am about the idea of being pregnant.  The last two appointments have basically been a rundown of the laundry list of possible complications I would face during pregnancy (this from two doctors that actually seem mildly encouraging about me being able to sustain a healthy pregnancy) and a lot of talk about how closely I would be monitored through the whole process.  I have been talked to about how it is not really a question of IF I will be on bedrest, but at what point.  Pre-eclampsia has also been discussed ad nauseum.  I will be monitored bi-monthly via ultrasound due to a potential heart condition that can be caused by an anti-body that I show positive for, apparently the issue can be correctable with surgery so even though this is considered “rare” they still monitor for it).

While I probably should be, I’m not really scared about all of this for my own health/discomfort.  I have been through a lot of physical discomfort because of my lupus.  I have been bloated, nauseated, exhausted, physically unable to stay on my feet for more than few moments…I would have much rather preferred to go through all of it with the “prize” at the end of nine months.  So the prospect of going through all the physical crap and all those appointments with the hope of a baby at the end of it sounds like quite the deal to me actually.  I will probably still complain about how shitty I feel if the pregnancy turns out to be a difficult one, but eh, such is life.  When I look at it from where I am now, I am okay with this part of it.  I am scared of losing more kidney function but again if I’m looking at this through the lens of having a healthy baby at the end?  It feels very worth it.

But knowing all that can go wrong…having to plan for worst case scenarios…I think this is why I am not really angry at my rheumy for being so negative about pregnancy.  I get where he’s coming from.  The concerns are real and serious enough that they cannot simply be written off no matter how badly I want to gloss over this, plunge in and deal with the consequences later.

There is just so much to consider and I worry constantly that I’m being selfish by insisting on getting pregnant and trying to have a biological child.  I’m terrified that if this turns out badly I will hate myself forever.   And yet I’m not willing to give up this dream.  Which makes me feel even more selfish.

I really haven’t talked about these conflicting emotions with anyone other than Paul.  Mainly because from the outside I know the simple answer is to just not risk it.  Maybe it’s the “right” answer but it doesn’t feel right.  Maybe it’s the answer I will come to in a few months if/when we are actually allowed to start TTC and I’m not in the middle of fighting merely to have the option of trying (i.e. where I am right now), but it’s not the answer where I’m at right now.

Anyway.

I’m supposed to call Dr. Kidney on Thursday to see what the “team” thought about The Big Switch.  I’m trying not to get my hopes up though I think the chances are small that they would say no (since I’m not asking to be totally off meds or anything wild and crazy like that =P).  Still, you never know.  And then there’s the question of how my body will react to the new meds for a few months, and whether or not we will even be able to get pregnant (which I don’t take for granted anymore), and if we make it that far, nine months after that of “walking on eggshells” as my rheumy so eloquently phrased it.

So I guess that’s that.  I started this post so many days ago now that it’s just become a mish-mash of all the random crap I’ve been thinking about.  I guess it’s fairly obvious that my mind has pretty much been consumed with one thing and one thing only.

In an attempt to end things on a positive note, I did have the thought on the way home from the high-risk ob (way back on Halloween!) that in a way it’s been a blessing that Paul and I have had so much time as a couple (7+ years now) alone as a couple.  As much as I do want to have babies, I also enjoy having my hubby all to myself.  Maybe it’s only now that there’s actually a very dim light somewhere at the end of that tunnel that I can feel this way, but I try to remind myself every day now to enjoy our time alone as a couple.

Apparently, I have nothing to say anymore.

This is kind of true, and also kind of not.  I have nothing new to say anymore.

Just the same old feelings, thoughts, pains, and gripes over the same old crap.

I’m overwhelmed by this feeling of being stuck.  And of incompetence and general loser-ness.

Yesterday I almost had an emotional breakdown at work, in the middle of the day, for no particular reason.  I’m not sure what started it, maybe a friend asking me on chat if I would describe myself as being happy with my life, but plenty of things sent me spiraling deeper and deeper into a pit of emotional despair (especially when a new-dad and very-soon-to-be-dad started discussing birth behind me).

I came thisclose to breaking down into a sobbing mess while sitting at my desk (surrounded by dudes) which would have been REALLY hard to explain considering NOTHING was happening.  Luckily the person who sits right next to me was gone yesterday and I was able to wipe away the tears before I had to interact with anyone who might have noticed.

Clearly, I’m about to get my period.  Because I really hope I’m not just turning permanently into a weepy hot mess.

I have been having a harder time dealing with things lately though.  To be honest, it’s probably another reason I haven’t been posting, a lot of what I want to say are things I’m sort of ashamed to admit.  Whenever I hear about pregnancies, babies, etc., it’s like one of those sitcoms where an angel and a devil appear on each shoulder.

The angel, of course, is genuinely happy for other people (especially the people I love!) and wants to hear all about it.  I love my friends kids and babies and growing bellies!  I am honored when they let me be even a small part of that.

But then, there’s the other side, with that tiny devil sitting there.  Who’s not being not happy for them, but rather being unhappy and feeling sorry for myself.  Who can’t help but see or hear about other people’s children without it being a painful reminder that I don’t necessarily get all that.  The devil is also questioning whether or not I’d even be a good parent and saying horrible things like, MAYBE THAT’S THE REASON.

Except that really doesn’t seem like the criteria by which God chooses people to be parents, does it?

But anyway, when I’m being honest, I feel both sets of emotions.  With certain people I feel more one way than the other.  But for the most part they’re both there and a part of me.

***

I have this secret plan I haven’t told anyone about yet.  It’s sad, but since it’s related ot my health, I sort of already feel like it will fail.  And I hate people knowing I’ve failed so I can’t bring myself to say it out loud.

I finally started tapering my meds.  On my own.  I’ve been back on them for over a year now and things have been quiet for a year.  My doctors seem to be telling me I will take medication for the rest of my life and I find this completely unacceptable.  If I thought being on the meds for longer would give me a chance of getting off of them I would do it, but at this point I’ve been taking them for almost seven years so I don’t think that’s the issue.  The issue is whatever the underlying disease is?  That’s still there.

I’ve been doing a bunch of alternative medicines (although I could adhere to them a little more strictly…) and my kidney function at last check is better than what the doctors told me I could probably hope to get back to.  So maybe something is doing something.

Oh, and I have an appointment with my doctor coming up and I don’t plan on telling him.

I’m a rebel like that.