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Nichole Grace
06 October 2015 @ 08:42 pm
It's been a fucking fuck of a month.

I miss everyone here so much.

WHY CANT EVERYONE BE AROUND IRL?!?
 
 
Nichole Grace
21 June 2015 @ 11:24 pm
Oh hai. I'm sitting at my computer which means I'm not standing which means I'm not mostly just being a DJ for babies on my super glorified ipod. Actually, I'm not sitting, either. I'm laying in a hospital bed because what else would I be doing?

My lungs have managed to eat all of the dicks in the last week or so. Like, I've been sort of hanging on the threshold of productivity, and then Violet gave me a cold. It's like I'm obligated to socialize my baby and introduce her to the world or something!

There's always a push-pull of wanting her all for myself but then relenting and sharing her because OH GOD SHE'S JUST THE BEST. She's a really great kid, and I'm so happy to be the one to show her the world and teach her things.

Except that she then gets me incredibly sick instantaneously.

And my IV benedryl just kicked in.

It's been real, folks. I suppose I'll try to log in again soon. The last year was so very very hard and isolating and scary and I'm really feeling the absence of having a place to write.

Also, I'm super ashamed of how long it took for me to figure out how to create a new entry.
 
 
Nichole Grace
26 April 2015 @ 07:47 am
Note to my dear readers: Look at me! Taking steps to reclaim myself and my sanity! Still though, if anyone has any tips on how to fit art and writing into a day jam packed with a toddler who won't let me near a computer, please share!!! Sometimes she and I take photos together, we also color. Lots of coloring. Also, I'm pretty tired and I feel like some of these sentences aren't as fluid as I'd like. Apologies in advance. Sentence fluency has always been a thing for me. Word feng shui. Right now I don't got it.

And so, here we go with the post...

The last month or so I've been reminding myself that I'm the type that oozes creativity. Whether or not my creative endeavors are any good is irrelevant. But as a human, my particular brain needs outlets. When the creativity and urge to produce dries up, things are bad.

I'm actively pondering art and writing now. Things are looking up and my brain is slowly picking up speed for the better. It's a gigantic freight train that has been at a complete stop for a while. It has restarted for the time being, but as it's a huge freight train, getting back up to speed is very slow business. I'd very much like to wake up one morning soon and see that I'm back at full speed. But I have to also be okay with that might not happening. I have to also be okay with waking up one morning to see that I'm at a full stop.

Looking back through my journal it's 100% obvious that I have a mood disorder with serious ups and downs. Coming to terms with that has been one of the most difficult things I've ever had to do. As much as I have to be okay with being bipolar, I have to be okay with the fact that I might never be 100% okay with it.

My goal is to accept myself on my good days and the bad.

I'm rambling. My point is that it's really fucking difficult and at this point I'm still pretty sure that at some point, probably in a few decades, I will have had enough of it.

In the last couple of years my body has been exhausted, which takes a toll on my brain. When Violet finally gets tucked into her bed with her soft blankie and giant caterpillar to snuggle, then pulling her "big girl blanket" up to her chin, I have nothing left in my gas tank. I'm running on fumes. Not a single part of me feels motivated to write or draw or edit photos.
 
 
Nichole Grace
26 April 2015 @ 07:44 am
Note to my dear readers: I don't write often anymore and this post is LOOOOOOONG. I'm not sure how it will fare in the online world which caters to the ever shortening attention spans. I'M SORRY THIS ISN'T A LISTICLE. OKAY? <3 <3 <3


My life has been a very consistent cycle of having a couple months at home and then two weeks in the hospital. After a couple of stays last year my doctor anxiety is through the roof, but that is getting better.

I sit in my bed listening to them placating me, "We're on the same team and you know your body best! It's important that we make decisions as a team."

I've gotten good at calmly replying, "You tell me I know my body best when it's convenient for you. We make decisions as a team only when you make a decision I agree with. Ultimately, I know and you know that you call the shots. It's unfortunate. When I look at my medical records I can clearly see that I do better and can stay out of the hospital longer when I've been able to stay in longer. I'm only being pushy because staying in a few days longer now, away from my daughter, means that I can stay at home with her for longer stretches of time."

They stare at me blankly, hoping that I'll stop talking soon. I go on anyway. Before they can nod and say, "Mmmm hmmmm. I understand."

"But it's okay I suppose. I mean, it's not actually okay but whatever. You call the shots. I will go home. Rather than continue this discussion I'd prefer to not waste any more of our time so you can get on with your rounds and I can get some rest.

"No hard feelings, even if it seems like it. I respect you and where you're coming from, but at the risk of sounding stubborn and bullheaded, we're at an impasse. I'm sorry."


It fucking sucks. I'm so tired of the game. Notes from the hospital attendings get sent to my therapist telling him that he needs to teach me tools to help me reign it in. It amuses both of us because my therapist gets tired of playing the games with other doctors, just as much as me if not more.

Our brains can run in circles around some of the attendings who have unfortunately become robotic with their care.

I'm getting better at playing the game. Manipulating the attendings into thinking they're swaying me. This hospital stay I was able to get two more days out of what was supposed to be a ten day stay. I was able to take advantage of having "too many cooks" and I my ten day stay turned into 12 because it is impossible to have them all in my room at the same time. Twelve days is till not the full course. My sinuses always lag behind my lungs in terms of responding to antibiotics. So I'm still getting sinus headaches and I have no real sense of smell which is such a disappointment.

Staying in-house for a couple of more days for my sinuses sounds like overkill. My doctors look at me with SUCH incredulity when I explain to them how limited my treatment options are for my sinuses. I explain to them that I understand where they are coming from, because I do. Hospitalizing someone for a sinus infection is ridiculous. But the doctors are myopic. They don't have the time or resources to be anything else.

I'm left sitting in the crosshairs of medical and insurance bureaucracy. But I do what I can to advocate and I'm getting better.

While it still sucks in so many ways, I can see my advocation skill set growing and getting stronger. That feels good. It feels very very good.
 
 
Nichole Grace
18 March 2015 @ 02:57 pm
I'm finally sitting at my computer during V's nap time. And she's actually napping.

Toddlers are hard work, yo! Like... it's quite intense. And lovely. And stressful. And the best. And the worst. But mostly the greatest.

Violet is growing up to be a very lovely and opinionated young lady. She has so much hair! All of the hair! It's really reactive to the humidity but never in a bad way. Some days she has perfect loose curls. Other days it's stick straight and a little more difficult to keep in braids and ponytails but show me a baby with messy hair and I will show you a baby who has had a good time. Messy hair is directly related to having fun.

Truth.

Anyway, I couldn't tell you whether or not I'm fulfilled. Sometimes my heart feels SO FULL and other times it's empty because I'll go for days completely lost in staying above water. Losing myself.

Some days I want more than anything to just disappear because my mental health problems take a front seat to parenting and that scares me. Between cystic fibrosis, bipolar disorder, and raising a kid, I essentially HAVE disappeared. But not in the way that I'd like. I want to be gone. I want my physical matter to just POOF. Be gone.

Yet here I am. And I'll continue to be here; mostly present but inching ever closer to death.

My health is declining. I still have so much but it's not enough. When I compare myself to other people with Cystic Fibrosis I do see how much vitality I still have but it's not enough to raise a toddler. It puts a lot of strain on ALL of my relationships and the exhaustion activates my mood disorder.

Recently I went a whole two weeks without suicidal ideations or urges to self harm and it was so beautiful. Then I woke up one sunday hurting all over and coughing and all I could think was, "What's the point? CF or Bipolar Disorder will win. And my quality of life is shit."

Because it is. And I honestly try REALLY HARD to stay above water and maintain some semblance of normalcy but it's exhausting. Up until a year ago I couldn't conceive of bipolar disorder winning but that's definitely changed.

I'm so thankful for all of the love and support I continue to receive and I hope to never lose it. I don't want to be that person that pushes everyone away. Some days of course I feel I don't deserve it. At all, and the proper course of action is to run away from everyone as fast as possible. I'm a shit and I feel like shit and I treat people like shit but it's unconditional love that keeps me going.

I find myself pondering what I've done in my life to be on the receiving end of so much support. I think it's because I'm nice and trusting; my heart is disorganized but large. Maybe that's it.

Whatever it is, I'm grateful.
 
 
 
Nichole Grace
28 January 2015 @ 08:30 am
Evan and I are having our commitment ceremony in four days. FOUR DAYS. If only there was something out there than all caps to convey in those two words how excited, nervous, and anxious I am for saturday.

Things do seem to be falling into place.

I GET TO MEET TWO GREAT PEOPLE THAT I MET ON LIVEJOURNAL.

One person was the only person in the world I felt comfortable talking to when I was in the deepest of my suicidal throes three months ago, and who magically knew when I needed him most. He'll be the photographer. I will get to hug him and it is about time.

The other, with whom... shit. I don't even know where to start. But I get to see her. And I get to hug her with the power of 1,000 emotional skype conversations tomorrow afternoon.
 
 
Nichole Grace
Hey, so... how have three months come and gone since I last posted?

That's kinda stupid!

Fortunately my brain is in a much much better space than the area it was occupying in the middle of October.

At the time, just when I thought my shit was finished bottoming out and I was ready to start picking up pieces, that bottom would fall away only to reveal an even worse bottom at a greater depth of shit.

There were a number of contributing factors but I think the two biggest things in my life that triggered the super shitty chain reaction of self-hatred, self-harm, and self-medicating, was the passing of two of my closest friends with CF.

While I can't speak for either of them, obviously, it seems likely to have been passive suicides for both.

When a mutual friend broached the passive suicide term I felt a little angry at my friends. Why would thy do that when there are always so many great things to live for? Then my own life started to do the bottoming out inception shit and by the end of October I came close to finalizing my OWN life in a way not even remotely passive.

Fortunately I didn't do anything drastic. I mean, mostly fortunately. My brain isn't in the clear yet. I feel confident and safe from myself the majority of the time and I hope that holds for a long time to come. The thought of confronting such dark parts of my soul again haunts me, though.

I'm just not sure that's something I can do repeatedly without succumbing entirely to the shit inception monster.
 
 
Nichole Grace
14 October 2014 @ 04:03 am
My text isn't showing up here. This app.... hrrrrm.
 
 
Nichole Grace
26 September 2014 @ 01:21 pm
It's strange to say but there was a point in time that Nicole Boyce and I were actually pretty close; chatting on AIM quite often. She was called Nikki when we met. Kina never rolled smoothly off of my tongue. I just couldn't get behind it. And the name change represented a change in her personality I wasn't comfortable with.

We were a curious bunch in the "olden days" of the CF community. Very emo. And unfortunately we all pretty much stayed that way.

I have one friend left from that time. One friend. Everyone else is gone.

How strange.
 
 
Nichole Grace
06 August 2014 @ 07:20 am

I haven't really been updating because the livejournal app on my phone hasn't been working very well and despite having a REALLY nice laptop (oh god, it's so nice) it has somehow been demoted from an awesome batch photo editor, to primarily a Sesame Street streaming device. Evan has a really nice iPad that he received as a christmas bonus from his employer, and I always joke around and refer to it as his Reddit machine since he just cruises Reddit for hours on end when he's tired. That too, has been converted to a Sesame Street machine.

Gone are the days of watching programming for big kids, or using cutting edge technology to play complicated games or edit photos and video. Yes... gone are those days. They have been replaced with Sesame Street.

Lots and lots of Sesame Street. It could be far worse, though. There is some shitty and weird kids' programming out there. Sesame Street has jokes that are aimed at adults at least. Here and there. The kinds that go over tiny kiddos' heads, which makes the jokes all the better.

*****

So anyway, I haven't been posting anything here. But I've wanted to. Because my health is kinda fucked up right now.

Oh man, guys. It has been such a shitty year for my health. I haven't lost much lung function wise, but my body is definitely starting to feel old and creaky. And it's fucking hard and ridiculous to keep my lung function where it's at.

I hate to say it, but holy shit I'm actually feeling disabled these days. That title has always felt weird to me but as of late it's applicable.

*****

I went in for PFT's yesterday (pulmonary function test, for the uninitiated) and the most important measurement was down over 10% from my baseline. And my baseline is down 6% from spring of last year.

Ugh. Writing that out gives me a pretty big case of the sads I'm so thankful my numbers were as high as they were to begin with.

Kids are hard, guys.

*****

So yesterday I went in for PFT's and in a few hours I have an important appointment with a CF doctor who makes me nervous. They always think I look great and my numbers are quite a few steps above dying, so they say things that make me feel like my concerns are unwarranted, and that I should be able to keep my shit together better than I am.

They make me feel like a harpy hypochondriac. But I'm not. And I'm not the only proactive, educated female that has run into this problem. It's like diagnostic overshadowing based off of the very basic gender diagnosis. I really hope I'm wrong about this, but the older I get the more legitimate these fears seem to be.

My worries seem especially accurate when I connect with a random female attending physician here and there; one who isn't part of the massive medical boys' club.

Anyway. Wish me luck. I'm nervous.

Tags:
 
 
 
Nichole Grace
29 July 2014 @ 01:37 pm

My head looks huge!


And since I have this app open, I'll rummage through my camera roll and see if I have any other nice pictures to share.


The picture of health and vitality:


The medcin:

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