specialists vs normal people doctors

First, the good news, my beta at 4w5d was 5,043!  The nurse seemed quite happy with it so I’m going to take that and run with it for now.  She even said that they’d be able to prove to me soon that there really is a baby growing in there hehe.

And now the annoying stuff.  I’ve been on a quest to find a regular OB and I’m so frustrated by dealing with office staff that is only used to dealing with “normal” people.  They don’t seem to understand what “high risk” means and since this is my first pregnancy, I really don’t know what it means either, but I do know it means that I should not be getting my first u/s at 12 weeks.

I was specifically told by my high risk ob that I should be getting u/s quite frequently, if not at every visit.  I was also told there would be more labs done and more frequent visits than in a “normal” pregnancy.

Well the staff at all these “normal” people offices don’t seem to get that at all.  They keep telling me that as long as there are no obvious complications (i.e. bleeding, cramping, etc.) that they believe I’ll be treated the same and on the same schedule as any other patient.

Um, no.

That is not going to fly.

Then they ask me things like why I’m high risk and clearly have zero clue what lupus nephritis is and why it would make me a high risk patient.

I just don’t want to deal with these doctors for “normal” people.  I like the safety of my specialists who actually know what lupus is and what the risks are.  I don’t know if I can trust a “normal” OB who I will probably have to educate on my condition.  I mean, seriously?  What is the point of seeing a doctor who you have to teach about your medical condition?

I love my high risk ob so much and am so upset that he can’t be my sole provider through this.  I have a feeling that every visit with the “normal” OB is going to be needlessly stressful and frustrating.

I hope I’m wrong, but I just can’t see this going any differently.

finally

Updated my About page. It only took me 2+ years!

the crazy

So…I’ve pretty much gone into full on anxious-crazy-pregnant-lady mode.

As in, constantly obsessing over whether or not I actually am still pregnant.

Today’s reason du jour, my b.oobs are not quite as sore as they have been.  It is my only real, for sure, pregnancy symptom and I have been poking at the girls all day and they aren’t quite as angry as yesterday.

Cue minor emotional meltdown.  I called my nephro’s office this morning because the high risk ob is out of town and I figured that meant I can’t get another beta from him, I waited all day until I couldn’t wait any longer and called back to see if the receptionist had gotten him my desperate pleading message to order another beta.  She was really sweet and finally got ahold of him and he asked why I didn’t just call the ob’s office because his staff should be able to call in the order even if he was away.  So I did and the nurse was like, “Sure of course.”

So I could have saved myself the angst of waiting all day to find out whether or not they’d let me get another test.

Oh well.

Right when I got home from work I headed straight for the car and the hospital.  Even before I had my blood drawn, my mind was already racing with thoughts like, “What if it JUST started falling?  How will I know unless I get another test after this one?”

Hi, my name is Joyce and I’m addicted to pregnancy tests.  Pee sticks, blood tests, ultrasound, whatever, just someone reassure me I’m still pregnant pls ok thx.

I’m very torn as to whether or not I want to have morning sickness.  On the one hand, it kind of makes sense that I don’t since my mom said she never had it with either me or my sister.  I’m assuming things like that are somewhat hereditary so if she never had it, it’s reasonable to assume that I might not either.  Since I have a horrible appetite to begin with and feel nausea all the time under normal circumstances, the fact that I’ve actually felt better since getting pregnant could mean that NOT having morning sickness actually is my symptom?  And if I did get morning sickness I would probably not be able to eat anything at all since I already have no appetite to begin with (normally).

But this whole lack of symptoms thing is really pretty disconcerting too.  It’s too early for me to feel the baby move, we haven’t even had an ultrasound yet, and all the other “symptoms” are things that are kind of normal for me anyway.  Like being tired (I also haven’t been sleeping so hard to attribute that to being pregnant), breaking out (something I never did as a teenager but have been having issues with over the past year or so), stuffy nose, bloated and peeing a lot.

Okay.  I really need to stop now.  This can’t be healthy.  I need to let go of this because if anything bad is happening right now inside of me, I can’t really do much to stop it, can I?

I just have to believe in my body.  Obviously given my past this is VERY hard to do, but Paul pointed something out to me yesterday.  Despite all the shit my body has put me through over the past eight years, it has done something right recently.  It got pregnant very quickly.  And so I need to give it a break and just hope that it keeps doing right.

embracing joy

This morning Paul and I went to church for the first time in several weeks.  I’ve been finding excuses to miss for the past few weeks so I made a point of us going to the earliest service this morning so that I would have less time to talk myself out of it.

As always, I was so glad that we went because it was a message I know God meant for me to hear, now, when I need it the most.

It was the second week of a new series called confidere: Advancing with Faith and today’s message in particular was about embracing the joy of life and how this was illustrated in Jesus’ first miracle (turning water into wine at a wedding feast).

Ever since I saw that faint second line last Monday, I have been wondering, how much joy should I allow myself to feel?  How happy can I be about this?  I have been doing a lot of hedging, never wanting to talk about “when” we have a baby, but still “if.”  My friend EndoJourney actually wrote an amazing post about this recently which really hit home with me even though her road so far has been a million times harder than mine (luckily she is also one of the strongest people I know).

When you have had things go wrong, when the road to joy has been difficult and when you are well aware of exactly how quickly it can all be taken away from you sometimes it seems impossible to celebrate the moment.

But after this morning, I’m convinced that that is exactly what God wants me to do.

Here are the notes I took:

  1. It [the miracle] happened at a wedding feast (a celebration). The way of Jesus was a happy way.  Jesus was comfortable with celebration. Jesus models for us an essential joy and a way to celebrate.  People feel comfortable around him and he had a love of life that was contagious.
  2. It was the result of a request that could be viewed as frivolous. It reminds us that we cannot put Jesus into a box.  Jesus embraced all aspects of life even as he came to give his life.  As long as we live our life with humility and for God, we should seek to enjoy the gifts of life.  Jesus did not see the unfairness of life as a justification for pulling away from celebrating the gifts of life.
  3. It was an answer to a request from someone He loved that was made for the benefit of another.  We’re given permission to ask for blessing even when it is not an earth-shattering request.
What does it mean to live a spiritually integral happy and joyful life?  There will be times the Lord asks us to pull back, but there are also times He will ask us to do things more joyfully.

 

To me the message was clear, no matter what happens tomorrow, God is asking me to celebrate today and each day I am blessed with this little life that grows inside me.

And if that wasn’t clear enough, as we sang the final song “Our God” by Chris Tomlin, I received a phone call followed by a voicemail which I checked as we walked down the street to our car.  It was my high-risk OB calling with the results of my second beta on Friday.

552 (doubling time of ~26 hrs, “normal” is 48hrs)

I admit, despite the sermon I had just taken in, my first reaction was mixed (so what’s new?), because I know I’ve read that betas that rises too fast can be bad in rare cases.  Luckily I called the doctor’s office and the answering service paged him and he called me right back to let me know in his mind this was an absolutely great number and he didn’t think there was anything to worry about it.

So today, I am celebrating the fact that I am four weeks and two days pregnant and that so far things appear to be going about as smoothly as I could have ever hoped.

Our God is greater
Our God is stronger
God You are higher than any other
Our God is healer
Awesome in power
Our God, our God

43

My doctor kept me in suspense until almost 11am, but in the end I didn’t care because…I’m pregnant!  hCG was 43 at 9dpo which my doctor said is consistent with being 3-4 weeks pregnant (by my calculations I am 3w3d). 

I was a bit confused at first because I thought 10dpo meant I was 1w3d, luckily Dr. Google cleared up the confusion by explaining that the two weeks before ovulation are actually counted towards the length of the pregnancy.  (Apparently I either wasn’t paying attention during s.ex ed or it needs to not be taught by the gym teacher in order to be effective).

I also found out I will be seeing four doctors for the duration of this pregnancy and not three because my high risk OB is not a “full-service” OB.  So now I have the added fun of trying to find a regular OB asap.  But again, I don’t care because I’m pregnant!  I’ll do whatever I have to do to keep this little one growing and healthy.

Right now I’m feeling a lot of things, the overriding emotions being joy and gratitude.  I don’t know how we got so lucky, the hubs is still in a bit of shock, “We really did it on the first try?” he asked me after I told him the number.  I guess those faint lines were not real to him but the blood results made it real.  He is pretty proud of himself, as well he should be!

Unfortunately, there is also a lot of fear and nervousness lurking in the shadows.  What if it doesn’t end up sticking?  What if my heart gets broken?  I have seen so many women in the blogosphere (and some in real life) go through so much pain, I’m not naive to the fact that anything could still happen.  But during those months I prepared my body for pregnancy, I also promised myself that I would cherish each and every single day that God allows me to be pregnant and not let the fear ruin this gift.  I’m determined to keep this promise.

I’m also feeling…a bit…guilty?  This kind of goes back to why I never really dove headfirst into the IF community even though I’ve lurked for years.  I have struggled and fought and clawed and scratched my way towards pregnancy, but my fight has been to be able to TTC, not to actually get pregnant.  And (at least so far – knock on wood) it seems that isn’t an issue for me.  We got a positive on the first natural cycle of my life.  It makes me feel like that person people in the IF community hate and part of me feels guilty that it came so easily.  I have to remind myself (as Hillary was kind enough to do!) that it was not easy, not at all.  It is for sure a huge blessing that I got pregnant quickly and I’m NOT one of those clueless fertiles that takes that for granted.

So hopefully those negative feeling resolve soon because I want this pregnancy to be all about the first two emotions I mentioned: joy and gratitude.

Symptom-wise, my bo.obs are starting to get a teensy bit sore and I’ve been super gassy and bloated.  Of course those are signs of PMS too so it’s hard to take too much comfort in them.

Last night was the first night in literally years that I did not take a sleeping pill to help me fall asleep and it was pretty awful.  I think I managed to get a couple of hours of sleep total, but now that I know there is something growing in there I’m just not willing to risk it.  I’m hoping that the “super tired” pregnancy feeling I keep hearing about will kick in and allow me to get a good night’s sleep without the pills soon.

I’m seeing my high-risk OB on Friday.  Not sure what they will be doing since I asked and he won’t be doing a pap or an ultrasound (too early to see anything they said).  At least, I’ll be able to get another beta I guess.

I still can’t believe this is happening.  I’m pregnant!

Still there

Another test with FMU – the line is still there and less eye-strainingly faint!!! Calling doc as soon as they open…

don’t know how i’m going to sleep tonight

So, Dr. Kidney went ahead and ordered bloodwork for me but since it was so late in the day we won’t have the results until tomorrow.

🙁

On the bright side, my blood pressure was excellent, my urine had very little protein in it and my complements were stable.  My doctor even said that if I am pregnant that could be a reason that my bp seems lower than usual.  Interesting.

On the way home I was seriously considering stopping at Wal.greens to buy every single brand of pregnancy test I could get my hands on.  I saved the cup of pee (gross, I know) so I figured I could dip each one in it and see if any others showed positive results.  I called Paul and he said that I was nuts and just to wait for the bloodwork to come back so I drove home.

But once I got home, I really felt like I needed to test at least one more time to make sure it wasn’t just a defective test, so I ripped open a second FRER from the same box and boom, another extremely faint, am-I-crazy-or-is-that-a-line line.  Paul confirmed that he saw something but he was still pretty skeptical despite my insistence that any line is supposed to be a positive.

I thought that second test would put my mind at ease, but no, suddenly my mind started jumping to the fact that maybe the entire box of tests was defective.  I decided I needed to use a test from another box and Paul really thought I was crazy but indulged me and drove me to Wal.greens so we could buy another box of FRERs.

I got home, ripped the box open and dunked away.  Three minutes later, there it was.  Another ever so faint line.  Paul was still not sure it meant anything.  He asked why I didn’t let him see the test window before I tested so he could be sure he was really seeing something.  I didn’t have a good answer, other than, shall I rip open another test?  He said no.

But I feel fairly confident that I’ve stared hard enough at enough negative tests over the past few years that there was definitely something.

I seriously can’t believe this is happening but I don’t want to get too far ahead of myself.  It’s early and unfortunately I’ve been lurking in the IF blogosphere for long enough to know that seeing a positive doesn’t necessarily lead to a happy outcome.

Earlier when I said I didn’t have any symptoms, I guess that isn’t necessarily true.  Strangely enough what convinced me to test today was the rain.  Normally when it is about to rain I know ahead of time because I feel queasy and my joints ache.  So when I went to go get lunch today and was greeted by a surprise downpour it made me wonder.  I read (because yes, I googled the crap out of “early pregnancy symptoms”) that there is something called early pregnancy factor which is produced after fertilization and that this EPF suppresses the immune system.  Could it be that my lupus wasn’t acting up in the rain because of the EPF?  That’s what I’m hoping anyway.

My doctor’s office opens at 9am and according to my lab they should have the results first thing.  Fingers crossed and praying that this is it!

um…..

I’m freaking out in a major way right now.

I started feeling really down about our chances over the weekend because I wasn’t feeling anything out of the ordinary.  No sore bo.obies, no out of the ordinary sensations, just normal normal normal.  I knew it was early but for some reason I just started feeling like this is not going to happen this month.

However, at work today, I started thinking, maybe I should just go ahead and test since I’m seeing my nephro today anyway and on the very slight chance I saw anything I could ask to have a blood test done.

I held my pee all day for the last four hours of work and as soon as I got in the house I ran upstairs, peed into a cup and dipped the test in.  I really, truly expected to see what I’ve always seen in the past – the test line and stark white nothingness.  Especially since I’m only 9dpo, I figured the chances were slim of seeing anything even if I do get pregnant this cycle.

I waited about four minutes and looked at the test.  At first glance, I was like meh, negative as expected.  But then I looked a little harder and took my glasses off and put it almost up to my face.  I thought there was something really faint there.  I ran out of the restroom to the window and stared at it under the sunlight.  A line so faint that I really couldn’t tell if it was just that I’d been staring so hard at the test line that I was seeing a line where there wasn’t one.

Commence massive sweating and freak out.  I called my doctors office to see if they’d let me come in early to take a blood test but they said just to come in at the appt time and if it makes sense they will order one for me then.

I took a picture of it for my friend EndoJourney to inspect (she confirmed that at least the line is not in my head, but now I’m like wait I took that pic after ten minutes, what if it’s an evap line?!?) and couldn’t figure out why the picture was so blurry until I realized I didn’t have my glasses on.  As you can tell by this incredibly disjointed post.  I am freaking the fuck out right now.  Please, please, please don’t be a ghost line or any other kind of messing with my head line.

Leaving for doc now.  Hopefully will have something better to post later.

procrastinating

Look at me posting two days in a row!

I am supposed to go get some labs done but for some reason I’m really dreading it today.  Maybe it’s because the draws at this lab almost always hurt.  Or maybe I just enjoyed the past few weeks of not having my veins molested.  All I know is I really, really don’t feel like being poked right now.

Unfortunately for me, at last check my liver enzymes were stable but still higher than normal so that needs to be monitored.  And even though my rheumy did not seem concerned that my complement levels were low (low C3 and C4 are a sign of active lupus), I know from looking at my past labs that they were on the low side even given my always low numbers.  So for my own peace of mind I’d kind of like to see them again before we have to really start factoring pregnancy into the equation.  I’m assuming that since I’m only 5dpo right now that even if there is something fertilized and swimming around in there it shouldn’t be affecting my numbers yet.  Or if it is…well…that would be a really bad sign wouldn’t it?

Speaking of 5dpo, I tried so hard today to just forget about the “two week wait” (2ww), but then came lunch time and the suggestion of Japanese food just reminded me, wait a minute I can’t eat raw fish (my favorite)!  And then I grabbed some chocolates from the box where our admin keeps snacks and had to think twice about whether or not I should eat it (I did).  How am I supposed to forget when I’m also supposed to be vigilant about what I’m eating/drinking?

Hoping that the next six days fly by…

(im)patient

Another post, another month plus in the history books.

Time is flying by and once again I can’t quite figure out how to capture what has gone by in the interim.

First, I think it’s important to note that during my previous blogging break, I was distracted and my life was focused away from desperately wishing to be pregnant.  Not going to go into what those things were right now, but well, for one, let’s just say our house had full blown Linsanity pretty much until he got injured.  And we are pretty hardcore NBA fans to begin with.  So…yeah…

There were also bridal showers, weddings and a various assortment of other time/thought-consuming events.

For the most part, things have slowed down (and basketball playoffs are in conference finals now so only one game per day).  Of course the lack of distractions has coincided with being cleared by the rheumy to go forth and attempt to procreate.

So I’m four days into our first two week wait and I’m praying that somehow we are one of those disgusting couples that hits the lotto on the first try because I honestly don’t know how I’m going to survive this month after month otherwise.

I might have mentioned this once or twice (or ten thousand times) before but I’m terrible at waiting.  I’m an incredibly impatient person.  Waiting three years to TTC clearly almost drove me off the deep end earlier this year.

The nature of my job doesn’t help with this at all, in fact it has definitely made things worse in this department.  Working in an extremely fast-paced market, sometimes waiting for a minute can mean losing hundreds of thousands of dollars in the blink of an eye.  Thus people in my industry do not like to wait.  Ever.  Almost everything is a fire-drill.

I don’t want to approach baby-making with the same attitude I approach work but I’ve pretty much already totally failed in that department.  (By the way, lil sis if you are reading this you probably want to stop now because there is mucho TMI ahead).

We’re one cycle in and the hubs is already kind of over TTC s.ex because we get up so early in the morning that during the week we normally only get busy here and there when the mood strikes. But of course, this month I was like, You MUST do me every night this week.  And he’s like, But I’m sleeeepy.  And I’m like, NO, we have to get pregnant NOW.  Thanks to client dinners though we still missed two out of the three days before ovulation 🙁

Also, he has an appointment with a urologist in a few weeks (first available) to get checked out and have a SA done.  When I brought it up to my rheumy he was very supportive of the idea since my doctors are now of the mind that if I’m going to charge forward with this whole “getting pregnant” ridiculousness that we might as well get it over ASAP so they can get me back on their preferred meds.

I’m not feeling super hopeful about this cycle because, who really gets pregnant on the first try?  Plus we missed those two days and I didn’t have much fertile cm this month.  I did get a very strong positive on my OPK though so who knows, maybe…

My question now is, how do I get through the next seven days without losing my mind?  And should I test at 11dpo (days past ovulation) like I’m planning?  Will that cause more or less stress?  I’m not really sure.

All I really know is I’m driving myself crazy analyzing all these symptoms that I don’t even realistically think can be there yet.  I mean, at this point if there was fertilization the embryo is still meandering it’s way down the tube right?  The problem is it is totally normal for me to feel randomly crampy or nauseated or super tired or get headaches or congestion.  But now, everytime I feel one of those things I start to wonder, does it mean something?  Even though it is really not very different at all from my “normal.”

Anyway, I really am going to make an effort to write more and I would like to write more about my lupus now that I am less paranoid about people in real life finding this place.  After spending so much time google-ing and looking for blogs with insight into the aspects of lupus I’ve struggled with I realized I am doing a huge disservice to others with lupus by not documenting my own experiences.  We have such an understudied disease that at this point the best we can do is to pool together our collective experiences.  I’ve noticed that there are more people with lupus popping up in the blogosphere and you know, the more awareness about this disease the better.

I’m just going to hit publish now so I don’t end up flushing this post down the drain with all the other drafts.

He said, I won’t give you more
More than you can take
And I might let you bend
But I won’t let you break
And no
I’ll never, ever let you go
Don’t you forget what He said