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.
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.
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?
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?
So yeah, as a family we’ve come to the conclusion that Disney’s Aulani in Oahu is prrrrretty much as good as life gets. We’ve spent the week here hiding from the SuperBowl 50 madness that has taken over San Francisco and it was an excellent decision if I do say so myself.
But enough patting myself on the back, that’s not what I’m here for. I’m just here for the reason I’m always here. Whine, whine, fret, overthink. Been doing it in my head for awhile now so I figure I may as well get some use out of this blog and use it for the outlet it was meant to be. This way my friends don’t have to hear it (and the ones who want to know where to find me – here).
Anyway, I saw my nephrologist again last week post kidney ultrasound and fresh labs (which were better but still above my baseline…again). He was still mystified and confused, which is exactly how you want your medical specialist in practice for several decades to feel about you right? No? Okay, yeah no. I told him I was at a loss, which is weird since I know how to read my labs pretty well by now, and he was all, “Wish I knew what to tell you but, me too.” So that wasn’t very helpful but it was kind of reassuring I guess because he was just like, well hopefully it’s a weird flukey thing, and told me just to get my labs repeated again (for the fifth time now). Exact words, “If it goes down to 1.2 then we’ll just chalk it up to a weird blip and move on.”
So the day before we hopped on a plane headed for heaven on earth (aka Hawaii) I got my labs repeated and then I tried to just sort of forget it all. It actually wasn’t that hard to do given the view (see above). I did end up calling on Tuesday just to see if they had my results and guess what? It went down to 1.2. So….
I see my rheumatologist next week (why am I leaving paradise? Whyyyyyy??) and basically this means we have the all clear to start changing my meds and *gulp* TTC.
Here is where things get weird. I should be all “yippee!!!” right? Growing up I always imagined having two kids, P and I always talked about two, more if it weren’t for my stupid crappy body.
But see…here’s the thing…I think with all we went through to have T, the whole NICU thing, almost losing him, and then watching my best friend live that entire nightmare without the happy ending, part of me just let go of the idea of having more. Part of me decided that T was the one I had to have. Before T, I had this feeling like I would fight through anything to get my baby. And I feel like one some level, I’ve lost that fighting spirit. More than before, there is fear instead of fight.
My life is so good. It really is. I feel like the most blessed person in the entire world. I have my wonderful husband, I have my perfect little boy, a supportive family, still employed, I have a roof over my head, food in my belly, heck, I have vacations in paradise. The world can be such an ugly, ugly place, I can’t even stand to watch the news most days anymore (I stick to reading articles about how awesome my Dubs are because yes even my NBA team is just ridiculously, unbelievably good right now – life is THAT good!), I just feel so lucky. And I’m scared that in reaching for more, somehow I could screw up the whole rhythm and balance I feel like I have right now.
Obviously, if we do end up having another healthy baby (God willing), I would never admit this to that baby, but I don’t feel like I need another one. And if I don’t need another one the way I needed T, then is it fair/right/whatever to have another one? I mean, wait, don’t get me wrong, I would LOVE LOVE LOVE another baby. We are here in this place surrounded by ridiculously adorable, chunky little ones and there is definitely a part of me that kinda wants to steal them and snuggle their chub rolls until security comes for me. And there is this huge tug on my heart when I watch all these siblings playing together while T is just playing in the sand by himself all lonely and sad-like (but not really cause he’s a happy kid). So it’s not that I wouldn’t like to have another kid, it’s just not the same visceral, animal-like need that I felt before we had T.
I just…know too much…I know what can go wrong, I know what’s at stake. Also, I’m more afraid for myself this time because I know T needs his mommy so I can’t even just be like “fuck it” like last time where I was like well if I die trying to do this then so be it. I’m not being morbid, just realistic, you know?
And then on a less dark, more normal level, I’m also worried about just the practical stuff. How do we actually raise two kids? I don’t think we can afford the preschool we’re trying to get T into if we have two kids. But the public schools in SF are literally shit, like so shitty that a public school product like me who always thought I’d send my kids to public school just won’t do it (and I know SO many other people who feel this way). So do we move? Do I keep working? I’m not really built to be a SAHM so I assume yes, but if we move out of the city how do I physically deal with the commute, how does it all affect my health? What if another kid doesn’t love sleep as much as T does (and as much as I do!)? What if the stress of it all affects my relationship with P? What if I really suck at being a mom of two kids? Sometimes I feel like I suck at just one, so am I being selfish bringing another human into the world to be raised by ME? I mean, is it even fair to do that to T and the as of yet unconcieved other potential baby?
I mean, I literally yelled at T and called him a chicken two days ago because he wouldn’t go down the water slide with me again. Shall I remind you? He is three and the poor kid just needed a nap. What kind of mom does that? Me, apparently. (Don’t worry, I apologized to him after I went down the slide alone and thought about what a mean horrible mommy I am, luckily he didn’t seem to remember because his dad had gotten him shaved ice, so at least the poor kid has one good parent).
So this is all the stuff I worry about. I worry and worry and worry more. And then my husband is all just like “meh, why worry about this? If we have another one, we’ll figure it out.” And I KNOW he’s right. But my stupid brain just can’t stop with all the worrying. So stupid. This is why I can’t tell people what goes on in my head.
At the end of the day my kid makes me a better person (except when I’m yelling at him for not going down waterslides with me). I’m sure that if I can survive another pregnancy and come out of it with a healthy baby, I’ll be better for that baby too.
Where’s the positive thinking fairy when you need her?
What’s high, if you don’t know low?
So I try not to complain
Appreciate life and I keep sayin
Another day goes by
Another day goes by
And I thank God that I’m alive
I don’t really know how to say this…but…here goes.
I think…I’m content. My life is far from perfect but in so many ways it is the life I’ve always dreamt of. And it is a weird feeling. Good. But weird.
I’m so used to chasing the next thing, always reaching for what felt unattainable. Except it has now been…attained? Being in a really good relationship, finding my better half. A career that while dosen’t give meaning to my life, gives me the means and the time for what does really matter. My son. My precious, beautiful, amazing, miracle.
A couple months ago now, I saw my MFM. The one who a year prior essentially warned us that he was very uncomfortable with the idea of me carrying anymore pregnancies. I wasn’t really okay with that at the time. To be honest, I wasn’t really expecting it.
This year, things were different. And just as unexpected. The entire tone of the visit was different. The vibes were positive, we came out feeling encouraged, I remember turning to Paul and saying, “Didn’t that sound like, ‘We can do this'”? He agreed, we were cautiously optimistic.
We decided that at my December rheumy visit if all my labs were still looking good we would start changing my meds so that maybe we could just “see what happens.”
Of course, my body, like it always does, had a different idea. Neither my rheumy or I can make heads or tails of what came back. Most everything is unchanged to better. Except for one important number which is an indicator of kidney function. That number looks ugly as all hell. But it makes no sense because my blood pressure is good, my urine is clear, and all the other results look good. I feel good. So what the wha?
I moved up my nephrology appt by two days because I’m hoping my nephrologist will have some sort of obvious (to him, the specialist) answer to all this.
And coming full circle to what I started this post off with, about being content. I am. That’s the thing. If T is our one miracle and this is our life, holy hell, what a blessed life I’m living. I am so, so lucky.
I honestly feel like I’m at a point emotionally where I can let go of the second child dream. I can look at all the positives of being a complete family of three.
I just want to know, is this it? Are we done? Because if we are, I am okay with it now. I just want to know so that I can stop living in maybe.
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? Â I’m not going to blame it on being busy, I just haven’t reallyÂ had the itch to write. Â 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. Â 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. Â 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. Â I really can. Â There are certainly legitimate arguments and good intentions on both sides. Â 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. Â 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 neverÂ am in a position where I have to make that decision. Â (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. Â I’m missing my youngest sibling and it wasn’t until recently that, that thought really hit me. Â For some reason I imagine it was a boy, maybe because we were a family with two girls and I always wondered whatÂ 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. Â I wonder how it would be to have another uncle or aunt to dote on T. Â I wonder what our childhood together would have been like, the memories we could have made, the adventures we could have had. Â I wonder what it would have been like to have a sibling so many years younger. Â I wonder if he would have gone to UCLA and followed in my sister and my footsteps. I wonder, and I honestly miss him. Â I miss the little brother I never got to meet but that I know existed. Â It’s really sad. Â 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. Â Does she ever regret it? Â Does she ever wonder what he would be like? Â Does she imagine he was a boy too? Â Does she imagine him at all? Â But even though my mom and I are close and talk about almost anything, I can’t bring myself to bring it up. Â I’m afraid it will be too hurtful a subject to dredge up.
So anyway, that’s why I’m here. Â 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.