I’m so upset right now and it’s my own fault.Â I’m upset with myself.Â Again.Â Upset to the point that I can’t help the tears of anger.
I wish it would help to throw things, to shout every cuss word I know or can make up, to put my fist through a wall.
But none of it is going to help or change a thing.
I got my blood taken this weekend, and it went well.Â I went in expecting things to be, at worst, unchanged from my last check which showed things to be stable (not improving but stable at acceptable levels).Â I’ve been feeling really good, well as good as I’ve felt in a long time.Â No aches and pains to speak of, decent energy levels, everything pointed to things being good.
And they were.Â Well at least the first few tests I’ve gotten back showed things actually improving this time which got my mind spinning with thoughts of maybe, maybe being able to get pregnant next year.
Then there was today.Â Today where ironically I went to a women’s networking event put together by my company.Â An event where they talked a lot (mostly) about how to balance having children with the challenges of a male-dominated, time-sucking industry.Â And I somehow ended up in a seat (next to my client) where the sun was blasting in directly onto me during almost the entire three hour event.
I couldn’t do it.Â I couldn’t bring myself to excuse myself, to move to another seat out of the sun, because I was worried how it would look and what my client would think.
And an hour later I’m already paying for it.Â The joints in my arms and legs hurt.Â I feel exhausted.Â I do have a sunburn on my legs even though supposedly glass is supposed to at least block UVB rays which cause sunburn (lucky me, I googled after the event that UVA rays cause the most issue for people with lupus and yup, you guessed it, UVA goes through glass).
So basically I’m fucked.Â I fucked myself.Â I fucked myself ONCE AGAIN and probably set myself back at least another few months if not longer all for my fucking job.
Okay, so I probably don’t give my husband enough credit sometimes.Â I can’t help it, I get so wrapped up in my head and imaginary conversations that I’ve had with me, myself and I.
I also don’t give myself credit.Â I’m not one of those people that’s good at keeping thoughts from my significant other.Â My husband doesn’t ever really have to guess what I’m thinking or if I’m mad, what I’m mad about.Â I’m incapable of keeping it from him.Â It tumbles outÂ immediately when he asks, “What’s wrong?”
And the reason I can’t tell him not to do this came out in our discussion just now.Â It all goes back to the fact that I feel like he is already being held hostage.Â I feel like my disease forces him to sacrifice constantly.Â I feel like if he had just married someone else, someone without this awful, disgusting baggage called lupus, his life would be so much better.Â I feel like I can’t ask him to give up one more thing when there is a high likelihood that he will have to give up something I know he wants so badly – biological children.
He can tell me a hundred times that if it comes to that, he’d rather be with me anyway, but I feel so guilty.Â I know that deep down he hasn’t accepted the possibility that we won’t have biological children.Â And I think there is a part of me that has come to believe that and it hurts so much everytime he tries to reassure me, that there’s still a chance.Â That I have to stay positive and be hopeful.Â Because, I’m just not.Â Not right this moment anyway.Â Not when I feel this way.Â Not when my shoulders ache with arthritis and I feel so tired.
But I get that my health is actually part of the reason he wants this too.Â Because he thinks if he can leverage this opportunity, it will allow me to be more fickle about my job and not work so hard and not pile all this stress on myself.
Ugggghhhhhhhhhh….is 6pm too early for a sleeping pill?
On Sunday after service I was actually wondering if perhaps God wasn’t trying to tell me that I should be content at my job, that even though it can be REALLY tough to be a Christian in this environment, that was exactly the reason I needed to stay.Â The sermon was about how we can glorify God in everything we do.Â I thought it was speaking to me.Â I thought it was a sign.
Now I have another sign.Â I feel terrible.Â Physically terrible.Â I shouldn’t even be sitting up typing this right now since my arms are aching up into my shoulder blades.Â My back hurts.Â My knees hurt.Â My kidneys ache.Â Everything hurts.
I’m exhausted, I feel anemic.Â And sadly, I know what that feels like.Â It feels like this.Â And this feels like another big fucking flare coming on.
And I’m pissed.Â I’m pissed at myself for not knowing my limits.Â I’m pissed that once again, just when I was feeling better and hopeful about my health and reproductive possibilities for the future, this is happening again.Â I’m pissed that I did this to my own body for a fucking paycheck.Â I’m just…so…pissed…at me.
Last week I went out to a baseball game with a client.Â I didn’t really want to go but my senior guy wanted me to come.Â It felt like the sunniest freaking day of the summer.Â I brought a big hat, I covered myself with my jacket even though I was sweating.Â But I should have known that I should have told them I needed to go inside.Â That I couldn’t be in that kind of sun even if I was all covered up.Â But I didn’t because I was afraid of how it would look.Â And now this.
And of course this was probably the most stressful week for the markets since I’ve started in my new role.Â Of course.Â And of course one of my senior guys was out so I had to put so much more pressure on myself than I normally doÂ (which is still probably too much).Â Of course.Â And of course, I can’t take time off even though that’s probably the one and only thing that can stave off this flare right now.Â Such is the nature of what I do.
I don’t know why I do this to myself or how much longer it can go on.Â I really don’t.
I’m dreading going to the doctor.Â I don’t want to.Â I’m going to up my steroids and hope that helps.
After three consecutive bad days at work, each one getting progressively worse (mainly because I was still feeling the frustration hangover from the prior days) today is finally a day where I’m not coming home wondering who kicked me in the face and why.Â I even had time to dig into some of the products I’ve been trying to get more educated on and things made sense, which I love!
I actually thought today was going to be the worst day of all because my string of bad days culminated last night with a dinner with some Very Important People from the Mothership, a dinner that went far too late even though I slipped out before the last round of drinks.Â The dinner itself went pretty well and I don’t think I did anything too damaging to my career, but I didn’t get enough sleep and knew my joints were going to be hating me today for it.Â Sure enough, I woke up stiff and aching.Â But I made it, and I have nothing to do tonight so I plan on sleeping.Â Like maybe at 7pm.Â Which sadly still means the max number of hours I could get tonight is nine.
Oh well.Â I can’t usually sleep that long anyway.
I was actually invited out to drinks this afternoon with another Important Person from the Mothership (but not a VIP) and I think my boss must have seen the panic in my face when he invited me because he quickly told me not to feel bad if I didn’t want to go so I politely bowed out.Â I probably should have gone but I just can’t do that to myself.Â I made a decision recently that as terrified as I am of losing my job, my health still has to be my priority because at the end of the day that’s what’s important.
So I plan to watch the rest of the most recent episode of The Secret Life of the American Teenager (because yes I still watch that show and dude, it’s fascinating, don’t judge me) and maybe take a little nap before I go pick up Paul.Â Is it sad that that sounds way more appealing to me than going out for drinks?
On the way to dropping Paul off at work I could feel it.Â The tears were coming today.
I’m not happy today.Â I don’t feel loved.Â Not because I don’t think there are people who love me; I don’t think I want to feel loved.
When I was alone in the car I told myself happy birthday and the tears came.Â I got to the garage, the song BeautifulÂ by MercyMe came on and I knew God was trying to love me and I wanted no part of it.
I still kind of don’t.
For whatever reason I just want to wallow in this feeling of brokenness right now.Â Not the good kind of brokenness, the heavy, ugly, old and tired kind.
I don’t know what’s wrong today, I really don’t.
I feel sick to my stomach.Â I feel frustrated.Â Most of all, I feel nothing inside.Â Numb, empty, dead.Â Nothing.
This too shall pass, but I don’t want to hear that right now.
I realized today that I still have yet to let go of the adolescent notion that somehow life is supposed to be fair.Â
An old acquaintance from the, er, crazier days of my youth is pregnant, or at least all signs point to that being the case (thanks ambiguous FB status updates!).Â
As mentioned before, I’m surrounded by pregnancies and talk of offspring on a pretty much nonstop basis, most of which doesn’t really bother me. But this one sort of feels like that one other one that did.
I knowÂ that I have no right to judge.Â That everyone walks their own path and that every child is a miracle.Â Trust me, I know what I’m about to say reflects poorly on me and my character in so many ways.Â But it’s the truth, it’s what I’m feeling deep down, and if I can’t be honest here, then I’m not being honest with myself right?
So here’s me in all my honest ugliness.Â
I can’t help but feel like it’s not fair.Â
She partied through high school, never even made an attempt at college, and generally seems to live a lifestyle that one would not reconcile with having an infant.Â People change, I know, obviously I’ve changed quite a bit since then myself, but from what I can see (again, only through FB updates so perhaps not a fair picture, but my brain is not in a fair place right now) not much has.Â
And I had to block her status updates because no, I can’t do it.Â I can’t watch this unfold.Â I just…can’t.
It makes me question my whole life.Â It makes me question everything I’ve done.Â All those “right” things.Â
Sure, I’ve had my blips along the way, and continue to, but shit.Â There I am five days a week, struggling to wake up in the dark so I can work my eleven hour day to pay my damn mortgage.Â Why did I do all this?Â What am I working so hard for?Â
It doesn’t seem to be paying off at the moment.Â
I know how I sound, I know how lucky I am.Â I have no right to complain.Â Sure I’ve worked hard for everything I have, but a lot of people have worked hard and have nothing to show for it…for better or for worse, sometimes that’s just how life works.Â
But when I see someone else who hasn’t necessarily achieved “success” in the eyes of society and yet has still managed to achieve something I may never get…it feels like how I felt when I was about to graduate from college and had no idea what was coming next.Â I had spent nearly twenty-two years believing that upon the completion of this major milestone (college), the future would suddenly fall into place -Â only to come to the harsh realization that there was no epiphany waiting around the corner and I was still going to have to figure out what to do with my life.Â I suddenly felt like I had been lied to my whole life but I couldn’t figure out who exactly had been feeding me the lies.Â
I’m just so…tired.Â Tired of trying so hard.Â Tired of being sick.Â Tired of my own, plentiful, shortcomings.Â
I recently broke my second, stronger, more reinforced NTI – the one supposedly designed to reduce grinding over time based on how it dispersed pressure on the jaw.Â The first time I broke it, my dentist told me he’s never really seen anyone break it in their mouth before, usually when people need replacements it’s because a pet got to it or they tossed it out on accident.Â And yet, I’ve gone through two now (and for the record, am still not sure where the piece I cracked off this time went, hopefully I didn’t swallow it).Â I askedÂ my dentistÂ this time (same clinic)Â why itÂ didn’t seem to beÂ working for me and she said, “You must have a lot of stress, there’s nothing we can do about that.”
It’d be nice, though, wouldn’t it, if it could all be fixed by something as simple as a night-guard?
I can’t believe I’ve let another two weeks pass since my last post.Â
Actually, I haven’t “let” it at all.Â
I’ve struggled to find something to say.Â To find the right words to explain that even though on the surface everything appears to be same old, same old, I’m a mess.Â (Okay, so maybe everything is same old, same old.)
I feel so stuck.Â I know I need to move forward but I’m just not sure how to do that right now.
I wonder if I could explain how many separate thoughts I have about the same fucking topic, if somehow everything would just make more sense?Â To me, I mean.
And yes, I know, that makes no sense at all.
Some of the random shit going through my head right now for example…
*** I find myself removing IF blogs from my reader once the blogger gets pregnant.Â I have a hard time with them because I’m just not there and there are enough pregnancies/parents around me that I’m actually invested in (i.e. good friends/family) that I don’t feel the need to follow the pregnancy of someone who is, for all intents and purposes, a total stranger.Â I torture myself more than enough without that.Â At the same time, I find it’s also difficult to read the posts by women who feel they have come to a point where they have to accept that they will never be mothers.Â Those are hard to read because I’m so fucking afraid that that will be me someday.Â That all hope will be lost and I’ll have to simply accept that I will never experience that part of life that we are instinctually built to want.Â (After all that is the purpose of sex right?Â And we know we all want THAT so…)Â I still force myself to read those blogs though.Â I can’t stop myself.Â What does that say?
***Â I think I’m depressed.Â I know you’re probably thinking that, that’s not news.Â I tend to write here mainly when I’m upset, so it probably seems like there are noÂ ups and downs, but I really was starting to feel better after the holidays had passed.Â I was starting to eat and sleep better, I started exercising, my energy levels were feeling pretty good…after that doctor appointment though…I feel like I kind of just gave up.Â It didn’t help that it coincided with that nightmare daytrip to LA (which turned into a late-night trip) so I don’t honestly know what it is, but I haven’t been able to shake this feeling of exhaustion since around that time.Â One night I got six straight hours of sleep and then fell right back asleep for another solid hour and a half and IÂ still woke up feeling like I hadn’t slept at all.Â (Normally I don’t sleep for more than three hours without at least waking up briefly.)Â Â So I’m actually sleepingÂ relatively better than normal but I feel tired all the time anyway.Â I’m notÂ really eating again.Â And also not exercising.Â My joints hurt.Â I’m tired.Â It’s cold.Â Blah, blah, blah.
***Â It bothers me.Â This feeling of isolation.Â Of so few people really knowing what this feels like.Â Sometimes I imagine myself standing in the middle of an empty field, screaming at the top of my lungs.Â Even in my head, it feels so…liberating.Â Honest.Â Does this make me (sound) crazy?Â I do understand, though,Â why people can’t know.Â People get pregnant on accident every day.Â It is supposed to be easy.Â It’s how the human race has managed to survive this long, isn’t it?Â That also makes me want to scream.
*** I told Paul the other day that I have been struggling with wondering whether or not God really always has a plan.Â See, I’m not questioning whether or not God exists, I still believe wholeheartedly that He does, but I am starting to think maybe He isn’t watching everything as closely as we’d like to believe.Â I don’t know.Â I can’t say I’m sure of that either, though.Â It’s just that when you very badly want to be able to carry your husband’s child after spending your life doing most things “right” (i.e. finishing high school, undergrad & grad school, getting married to a good man, getting into a good company & career path, buying a home big enough to “grow” into) it feels like there must not be anyone paying attention when there are babies being aborted every day.Â Or babies that are born and abused or killed.Â I mean, really?Â I would beÂ a worse parent than the people who are doing those things?Â Challenge.Â Sometimes life just sucks and isn’t fair, and maybe God doesn’t have to have a hand in that?Â Except, I don’t know that I find that to be a comforting thought either.Â I’ve always found it comforting to know that whatever was happening and how bad it sucked that there must beÂ a reason for it all in the end.Â I’m not sure I feel that way anymore and I feel lost without it.Â
*** Christians will often pray to be “broken.”Â (Don’t think I really hear it used much outside of that context?)Â It’s the only way I can think of to describe how I’m feeling, but I don’t really mean it that way either.Â I just sort of feel plain old broken.Â Broken inside.Â Physically, mentally.Â And probably, let’s face it, spiritually too.Â Sometimes I fixate on that word.Â Broken.Â As though there’s a little devil sitting on my shoulder, whispering the word into my ear to make sure I don’t forget I am broken.Â Â Where’s the angel?
*** Sometimes when I hear people discuss how physically difficult pregnancy is, I am painfully aware of how I have had almost every single “awful” symptom of a typical pregnancy (andÂ perhaps even ofÂ a lotÂ of the difficult ones)Â andÂ I didn’t even get a bundle of joy to bring home at the end of it.Â Based on the amountÂ of swelling and water retention during the last two flares, I feel IÂ am owed at least two already.Â Gaining 30lbs, nausea, anemia (= exhaustion),Â feet so swollen they don’t fit in your shoes,Â achingÂ lower back (not to mention pretty much any joint you canÂ imagine and some that you probably don’t knowÂ can ache like the one in your chest),Â high blood pressure, leaky kidneys…am I missing anything?Â I mean that sincerely, I’m not saying it to be snarky, it’s just that between theÂ side effects from the meds and the lupus itself,Â I’ve experienced a lot of crappy pregnancy-like symptoms.Â And I do agree that they suck.Â ButÂ it sucks even worse to have nothing to show for it at the end.Â Â
Clearly I could keep this going forever, such is the state of mind I’ve been in since my doctor had his poorly thought out adoption talk with me.Â But I think you get the point.Â This is why I’ve been so quiet.Â Because there is no continuity to me at all right now.Â In fact I’m kind of liking the stars, hmm….
Anyway, time to go pick up the husband as he is pretty much my last lifeline to sanity.Â Or something like it.
I didn’t screw anything up at work (as far as I know), in fact, I kind of kicked ass at my job today.
And, I got my Number.Â In the industry I work in, Numbers Day is like the biggest day of the year.Â It’s pretty much the reason we kill ourselves the other 230 or so days out of the year.
Anyway, I was pretty happy with it.Â Â Having your hard-work rewarded definitely feels good and I had the foresight to not get my expectations up too high given that 2010 was not a great overall year.
Everyone I work with had slipped out by 2pm so I had plenty of time to clean up and get out in time to drive down to my doctor appointment in Palo Alto.
I barely even hit any traffic.
I should have known the universe was being too kind to me today.
I was set up.
Even the appointment itself didn’t seem obviously upsetting.Â The tone was positive.Â Tests look good.Â Blah, blah, blah.
And then, he asked about my meds and I brought up the fact that Dr. Kidney had mentioned I could start tapering the C.cept in three months and that I had just cut myself down a dosage last week based on that advice.
Long story short?
My doctor told me to look into adoption. (Yes, literally).
Basically he said he will never feel comfortable with the idea of me getting pregnant.Â He said that he would be really scared and that he can’t tell me that he thinks there will come a day in the future where that will change.
When I realized where the conversation was headed, my brain started screaming, Don’t say it, don’t FUCKING say it.
But he said it anyway.
And then I started willing myself to smile and my eyes to remain dry.Â And I even forced myself to laugh as I frantically tried to smother any emotion I might be having because I really did not want to tear up in front of my doctor (again).
Maybe I’m completely overreacting.Â I haven’t decided yet.Â I haven’t decided yet how I really feel about this conversation.Â I’m not sure how to approach this anymore.Â
Although I did already have myself a good cry over all of this when I got home.Â
Paul discovered me in the bedroom, staring at a wall in the semi-dark.Â What can I say?Â I know how to do depressed.Â
He made me feel a bit calmer.Â Restored a bit of the hope I thought had been completely destroyed by that five minute conversation.
But I also kind of just feel numb now.Â Like I don’t want to react anymore.
I just want this to be easy.Â I want to not have to think so hard about this.Â
If only I knew how prescient that Desperate Housewives quote would be when it caught my attention on Monday.
This week has forced me to admit that all these pregnancies/births/adorable baby stories/actual babies…they are starting to hurt.
But, as ten years of blogging has clearly established (and yes, it’ll be ten years this month but that’s another post), I am an emotional cutter.Â So of course I have to hear every single one of these stories, seek out every picture I can get my hands on and coo over every adorableÂ baby that crosses my line of sight.
It’s like I love hearing about this stuff because it’s so freakin’ cute and I just love hearing about kids…but it also kind of feels like someone is pushing needles into my soul everytime I hear about the most adorable thing someone else’s child did.Â
Because I can’t help but think.Â Not mine.Â Maybe never mine.
And this shiver just goes through me and my throat closes up and sometimes my heart literally aches.Â
I can’t explain it.Â And I’m ashamed that such a wonderful thing could possibly make me feel this way.
It’s not that I’m not overjoyed for other people.Â I am.Â I see the joy in their faces, hear it in their voices…almost everyone I work with is a devoted and doting father (despite the stereotype of the absent Wall Street father, finance on the West Coast tends to be a pretty different animal)…which is awesome and actually part of the reason I love working with them so much…but recently it has been hard to listen to a lot of the conversations.Â
I know some people without kids get offended when people with children talk about how their lives and perspectives completely changed after their kids were born.Â I don’t.Â I get it.Â
They don’t even have to say it.Â Like I said, it’s just there.Â In the way people talk about their children.Â As though they are talking about unicorns that shit diamonds or something.Â You can’t really express that kind of sentiment verbally, it tends to come through non-verbal cues like the giant grin that breaks out everytime they mention their kids.Â
I don’t begrudge them that life changing happiness,Â it makes me happyÂ toÂ see parents loving their children like crazy, I just want in that fucking club.Â I want my life to change.Â I want myÂ priorities rearranged.Â Â
I want to know what it’s like too.
One of my coworker’s wife had their first baby this week and it has been especially difficult listening to the chatter about how happy people are for him.Â Â Hearing them recount their own stories of rushing off to the hospital, the amazement of being aÂ parent for the first time…all these experiences that I want so desperately to have and I guess theÂ aching comes fromÂ knowing this may never be in the cards for me.Â It’s weird, because I am really happy for him (he has been wanting her to pop one out since before they got married two years ago, even though he’s only thirty) and they are going to be great parents.Â I don’t feel envious of them, I don’t feel anything towards them except happy.Â But I can’t deny that it makes something about me feels a little bit more broken when I hear these things.Â Â
(Sounds like a personal problem, I know.)
The other day,Â I asked Paul if he could really imagine our lives with children.Â Â Because, I said, sometimes I can’t imagine what it would be likeÂ to insert a baby into our peaceful, stable little lives.Â HeÂ didn’t hesitate for one second, he said of course he could picture it.
Just anotherÂ sign of what I already knew.Â My husband is there.Â He’s ready.Â Now we really are just waiting for me.
It’s also hard because we’re getting to an age and point in our marriage (4yrs this July or 5yrs this June depending how you count it)Â where people feel comfortable questioning us on when the little ones will be coming along.Â I can’t get upset over them asking because I do it to other young couples too.Â It’s the natural progression of life right?Â You grow up, get married, have babies.Â The end.
Mostly, I just lie.Â I give people the “we’re still young” line and people accept it, because I guess by today’s standards we are.Â The truth makes people uncomfortable, and it’s complicated with me not wanting people to think of me as being “sick.”Â
Recently, though, I’ve started sharing a little bit with certain people.Â I think it’s just becoming too much to hold it in all the time.
My mom talks about it with all my relatives (and probably all of her friends too, but oh well, that’s just my mom) and then she tells me their reactions.Â Apparently when she told a couple of my aunts that Paul and I are seriously considering adoption, their reaction was “Why don’t they just not have kids, they’re so much work anyway.”
Which, okay, I get.Â My aunts love me and they are both going through struggles with every single one of the four (adult) children that they have between the two of them.Â I see where they are coming from.Â And to be fair, they have never been so insensitive as to say it in front of me, only to my mother, though I’ve never discussed having kids with them at all to begin with.
Anyway, I brought this up to Paul one day and asked him what he thought.Â Were they right?Â I knew that I really wanted kids no matter what, but did he?Â Knowing how much “trouble” they can be, did we still want to go down the path of doing whatever it takes to be parents (short of stealing one, I suppose)?
His reaction?Â Made me thank God I married this man…
First he laughed.Â He laughed like, seriously?Â They said that?
And then, he actually said, Seriously?Â They said that?Â Wow, that’s actually a really rude thing for someone with kids to say.
What do you mean, I asked?
Well, he said, How can anyone who has kids ask us why we want them?Â Why do WE want kids? Why did you have YOUR kids?
I know for people who don’t know my husband, that conversation was probably nothing astonishing.Â But folks, my husband does not say things like that about people.Â My husband is impossible to get a rise out of, so for him this was a pretty strong reaction.Â He was clearly annoyed by what they said, and this is a man that rarely gets annoyed at the words of others.Â So I think it’s safe to say that this is a sore subject for him too.Â And while, that doesn’t make me feel good, it is nice to have that confirmation that I do indeed have a partner in what I’m feeling.
I was watching this video this morning. At first I was mainly paying attention to the lyrics. They seem to accurately capture a lot of what I’m feeling right now. Except I think I may be applying it in the wrong way…
But then I actually started to watch the photo montage and when it came to the picture of the lone set of footprints in the sand, it hit me.
During your times of trial and suffering when you see only one set of footprints, it was then that I carried you.
Lately, I’ve been feeling a little lost.Â I used to believe so strongly that God had a Plan for my life even if I had no clue what that was.Â It was a comforting feeling.Â Â That there would be meaning at the end of the road.
But recently, I haven’t felt that way.Â I’ve been wondering if there really is a plan and finding that I’m not as comfortable with the not knowing part.Â (Although, let’s face it, I have never been super comfortable with that part of it because of the whole control-freak problem).
I realized though, looking at that stupid photo, that as alone as I feel right now, this is probably one of those times whereÂ He is really carrying me.Â And I have to trust in that.
Even if I don’tÂ feel confident about where I’m headed anymore.
This might hurt
It’s not safe
But I know that I’ve gotta make a change
I don’t care if I break
At least I’ll be feeling something
Cause just ok
Is not enough
Help me fight through the nothingness of life
I don’t wanna go through the motions
I don’t wanna go one more day
Without Your all consuming passion inside of me
I don’t want to spend my whole life asking
What if I had given everything?
Instead of going through the motions
No regrets, not this time
I’m gonna let my heart defeat my mind
Let Your love, make me whole
I think I’m finally feeling something
Cause just ok
Is not enough
Help me fight through the nothingness of this life