Monthly Archives: June 2013

Loving Technology

The Cute and I have been spending the heat wave indoors… unfortunately still sick but at least amused by the new toys we wield. It’s been a banner week in regards to technology in the ol’ homestead and it’s made the cabin fever so much easier to deal with. First of all, we recieved our new 3D tv this week, and I can honestly say that I’m madly in love with the immersiveness it brings to our movie watching. It’s fucking amazing! I am in awe how far the technology has come since it first “popped” onto the screen in my early childhood. Gone are the days of gimmicky shocks and red and blue glasses. In its place are sophisticated and subtle additions to the movie going experience. So far, we have only a handful of 3D movies but I see that number going up steadily in the future. The Cute and my favorite is, without a doubt, Wreck it Ralph.

Additionally, the tv, itself, is so muscreenadch nicer than our old one by a clear margin. It makes the regular blurays look stunning. We were unknowingly living in the dark ages with our old HDTV and now we are basking in the clarity. Well, at least I am!

I am such a technophile. I even have to admit to tearing up during our first glipmse of 3D in our bedroom. It is just so awesome to see how far things have come in the past twenty years. I still remember the big tube sets with the giant buttons. The hazy first viewing of Jaws 3D. And now this. Between my iPad, my 3D tv, and my Blu Ray player… I have died and gone to heaven.

And it doesn’t stop there… due to some hard drive issues, we have had to reformat my laptop, as of late. In the process, it was discovered that my Windows 7 disc had been misplaced during the move. So my husband decided to add a proverbial cherry on top of the techno sundae that is this week… he bought me Windows 8! Now at first, I was reluctant… I hadn’t been keeping up on it too much but the little I had heard about the new OS wasn’t encouraging but on second glance, it looked right up my alley. First it treats the laptop like a tablet… my complaints, lately, that the tablet technology seems to be quiickly eclipsing personal computer technology seem to have been addressed. Second, the fact that it’s made for touch capability means that paired with a Splashtop Remote Windows App…well, let’s just say that I’m typing this whole post on my HDTV from the comfort of my bed via my iPad!

So now I have a touchpad remote driven 50″ screen laptop that also plays 3D movies. Does it get any better? I think not!

So while it sucks that I seem to be getting sicker rather than better… and it sucks that I have a brain MRI tomorrow to check for tumors that’s freaking me out… and it sucks that my toddler is going through some sort of demonic possession (cabin fever meets the terrible fours), at least I have some grade A spectacular escapism to distract me from all that I can’t seem to control at this very minute. And if that’s all I get this week, well then, I’ll take it and be thoroughly grateful.


Sick again. Sigh

I thought I had bypassed Sky’s cold with just feeling icky. I was wrong. I was feeling so sick last night, I actually thought of going to the ER. When I get like that…everything hurts in this very weird, very bad way. Like I’m dying or something very bad is starting. It’s never as bad when the cold kicks in. It’s just the day before. I am however, hurting like a mo fo today and feel lousy. I am so sad as I was hoping to go on a date with my husband today. No such luck. 

However, I am excited. Last night, we decided to use some money we earned parking as a family(more on that some other time) to buy a very large 3D tv. It was amazingly cheap but reviewed really well.  I’ve really wanted one for awhile now but with everything we’ve gone through this year, my husband thought it was time to buy one for us as a treat. We so rarely get time off. Time to escape. Movies have been our one escape at home. And now I get to see them in Hi Def 3D! I am so excited. It comes tomorrow and I can hardly wait. And on the plus side, since I’m sick, it will be the perfect time to try it out!!!!

I lost The Cute…and my sanity, for a moment.

Today was a good day except for one terrifying moment.

The Cute was extra cute…wanting mommy snuggles and dancing to every song on the radio with the cutest dances. He was was so cute at times that it hurt. And then he did the bad. We were at the post office to mail a package and I was using the automated mail machine. I assumed he was right behind me like always. But he wasn’t. I suddenly realized he was gone and frantically began to call for him when he was escorted through the door at that moment by a sweet woman. My first instinct was to freak out at him from the fear but I just took a moment and hugged the living crap out of him. Then I scolded him with a normal but stern voice for not staying by my side.

He was outside, people! OUTSIDE! He could have been killed, maimed, or stolen and I wouldn’t have even known. Game over. I lose. WTF. 

I don’t deserve him.

But I get to have him. 

It’s amazing how your entire future life without your child can race through your mind in 3 seconds. I would never survive that loss. I admire those who can. But I hopefully learned my lesson today. He’s very quick and he’s completely without common sense. 

And wonderful, sweet, far-more-responsible-than-I woman who came to his, and therefore my, rescue? Thank you from the very bottom of my heart. I know I didn’t say enough thanks to you at the time because I was too busy holding my son in gratitude. You saved our lives. I love you. 

And fucking hell, I love my son. To the depths of my soul and back. 

Grasping at the dust bunnies in my head.

It’s been a day. I finally got out of the house for some pampering but in my state of mind…it felt more like a chore than a pedicure/manicure. I left still trying to find peaceful thoughts. My mind feels sticky and thick…clinging like molasses to the mundane looping thoughts in my head instead of the beauty around me. The moment I have I noticed the landscape or a cute thing my son has said or done, I am suddenly sucked back into my concerns. It’s agonizingly draining. 

I really do have a sense of humor, sense of wonder….sense of anything past this constant looping. But I just can’t seem to shake the grey. It will pass eventually, like it always does. But the panic I feel at missing out on the good ironically keeps me in the black as well. Sigh. I am my own worst enemy. 

I am being productive at the very least. Taking this temporary fog and putting it to good use. The “to do” list is easy…narrow and focused. And the steady ticking off of each mundane task gives me a tiny moment of pride. I am clinging to that. I can do that. 

Hopefully all those infinitesimal moments will add up to the real thing and knock my funk to the curb. Hopefully I won’t spend next week missing my dad…..feeling lonely and estranged from my friends…irritated at all that I usually love in my son. Hopefully next week I won’t obsess on my future and illness. 

I am hopeful that by next week I will feel like I am breathing. Not gasping.

The End is Near!

It’s been another interesting week. And by interesting, I mean…holy-batman-nuggets-what-the-fuck-is-going-on-in-my-body-?-can’t-you-just-work-properly-for-one-goddamn-second-arghghghghghghgh!!!

It started as pinched nerve last Friday, only a week from the last fiasco. It was the middle of the night and I was in a lot of pain so I was massaging my upper arm with a tennis ball. I highly recommend it for back pain. I put the tennis ball between me and the floor/bed and let the weight of my body attack the knots. It’s very painful at first but with deep breathing and focus, it really helps break up the knots. So as I said, I was doing this to my arm at the time…a painful area just about my elbow on the back of my arm. The pain was receding so I took my arm off the ball and was about to go to sleep when….”Holy Shit, I killed my hand!”.

It was totally dead from the wrist down, hanging limp like a pathetic corpse. It took all the effort I had just to lift it to lay parallel with my arm. And it felt all kinds of numb. I was petrified with terror. WTF! I woke my husband who was all shades of sleepy and calm despite being rudely shook awake by his hysterical wife.  He assured me that by morning it would resolve and to try and get some sleep.  I complied if only because I couldn’t think of any other option at the moment. At the time, it did occur to me that I must have pinched a nerve…but it was so extreme and terrifying .

The next day, it had improved slightly…I could feel and move it similar to a foot that has fallen asleep. And though it’s improved further, even today, it’s still unable to hold much weight and aches terribly at times. 

And to add to the drama, I got my latest labs back. All were awesomely healthy except for the ANA which tests for autoimmune conditions. It was the very reason my new doctor ordered the tests in the first place. Originally when I started this journey, I had the test done and came back fully negative, as one should be. But later in Seattle, a subsequent test found a positive speckled result of 1:40. This wouldn’t be concerning at all if you didn’t take into consideration the shit ton of symptoms I have that are similar to an autoimmune condition. And even with the symptoms, 1:40 is still very low and could be a false positive. So my newest doctor repeated the test (now three years later). And now I have a score of 1:160. A huge jump from the last one. And a huge big red positve answer as to why I’ve become a miserable poop head over the past few years. Lupus. 

Despite Dr. House’s fervent beliefs otherwise…sometimes it is Lupus. 

I am both, at once, depressed and relieved by this. It’s so strange to be relieved by a debilitating illness…but it’s been so long in the making. So many years being brushed off as a hysteric, a hypochondiac, and a drama queen. And that’s just how I have viewed myself…others have been worse, especially doctors.  It’s just so nice to be able to prove that it’s not in my head. That my pain is real. My struggle is real. 

But the depression is a little unexpected. I knew this was the answer before the results…but my mind is still having difficulty with it. And I’m still sad. 

I called my mother when I found out. WTF was I thinking. You would think I would know better. She made me feel worse. Horrible even. Writing off all my concerns and telling me to stop being so obsessed with my health. This from a woman who’s been a product of her health for years…the woman who asked the six year old me what I would do if she had a heart attack at the wheel. The woman who claimed that our arguments were killing her…(she has a heart problem…stemming from rheumatic fever as a child. Most of my childhood, her illness and resulting “fragile condition” was drilled into my head as extremely unstable. I thought she was minutes from death for years till I was old enough to research it and found that she should have been fine…in fact she should have been exercising and living her life. Instead she acted like all stress would kill her and yet she smoked like a chimney…still does….hmmm.) 

My mother should have been able to relate…but instead I think it bothers her that she has been upstaged. That she’s not the only one with a condition now. She is so fucked up. Like I’m competing. Like I’m using it to get attention, like her. Fuck that. I’m just a little shook up. But now I can just move on. It’s certainly not going to hold me back. I will learn to work past it. It still fells me occassionally(a lot lately, unfortunately) but I still blog, create, parent, love, exercise, and live. And I will only get better since the puzzle is solved. I can stop searching. 

I say that a little prematurely though. The ANA is not enough for the official diagnosis. I need to see a rheumatologist to confirm it…and that terrifies me since I have has such bad luck with them. And then there’s the brain MRI at the end of the month to figure out what’s in my brain(that’s a whole other post). That’s also anxiety inducing. But I see the light at the end of the tunnel. After July, I should be able to move on. I will still be sick. It will always be with me. But the journey to diagnosis that has lasted the past 13 years is almost at an end. I will have that part of my brain again. No more google searches. No more studying the medical archives. No more symptom lists and new doctors.

I can’t fucking wait. 

Changing up

The trend of lots of time to think continues. I've been spilling over with ideas, regrets, and frustrations. I feel both empowered and completely overwhelmed with all the work that lays before me. After this horrible weekend...this horrible period in my life, I feel the need to make some serious changes. To take charge of the little that I can. To focus on me instead of all the things I can't seem to change. 

Things like the way my husband talks to me. I can't stand the way he sees me lately. A burden. A hardship. An obstacle. I hate all his selfish ways and his constant fight to keep his "I" in what should be“we”. But thinking about it...I think what I hate most is that I can't be enough like that. I am afraid to be selfish. Afraid to demand what I need. Afraid I'll lose him and my family. And instead of working on that fear, instead of working on me and and my issues, instead of empowering me, I fight to change him. 

Things like my illness. I hate the unpredictability. The constant struggle to do the basics. The unknown of my career. The guilt I shoulder for my child and husband as I alter our days and our lives week after week. Instead of focusing on my strengths. My heart. Instead of taking the baby steps toward endurance and predictability. 

I am so impatient and hurting myself because of it.
I have too high of standards for myself and I'm hurting myself because if it.
I make it impossible to succeed and I suck at failing. And I'm hurting myself because of it. 

Failure. That's what I need to focus in. I need to fail and “like” it. Learn from it and love it. Know it's a process and that failure is a key part of it....not something to run past, get over, or avoid. Embrace it fully and embrace myself with it.

I figured out four things to focus on as a start.

My role as a mother.
My path to writing/illustrating childrens' books.
My health (my diet, exercise, and the way I take care of my illness)
My personal organization (as my brain has taken a holiday)
My blogs

Five things that I can control and nurture. I need to focus on those. And only those. No more arguments. No more trying to change anyone else for awhile. If my husband doesn't want to snuggle, then it's his thing...I won't let it crush me. If he treats me like a burden, that's his thing...I won't let my heart break. If my mother criticizes me or my son, it's her thing...I won't let her destroy my confidence. I'm done letting others rule my heart, my choices. At least till I can like myself enough not to be destroyed. At least till I can love myself enough to know what I'm worth again.
It's going to be difficult and I'm guaranteed to fail over and over again. But I will keep trying everyday till I can see a difference. That I can promise myself. 


The Crisis Mindset

On Thurs, I had just finished getting ready to go out when it happened. Just as I was pulling The Cute out of the bath, I heard a pop and suddenly there was an excruciating pain in my tailbone. Six hours, a shot of dilaudid, and a few X-rays later, I was home and wondering WTF. 

It's been a very long weekend. My husband, though he means well, usually disappears when I'm sick or hurt. I don't really understand it but that's just what happens. He takes The Cute out to a million different places and I spent the day watching tv or playing games on my iPad. But it always needs up with me thinking too much. And that is a bad thing when we are in a place this. We have a thousand decisions needing to be made with no resolution in sight. Questions that have no answers. Where are we going? Where can we live? How can we afford a home? What will I be able to do with my condition? What are we going to do about preschool for The Cute? How can we help my mother (who is slowly deteriorating and will eventually be unable to live on her own) when we can't help ourselves? How is my doctor appointment on Tuesday going to go? Should I even hope that its going to be helpful or should I just expect the same old rejection. 

I am just filled with anxiety and it doesn't help that the accident on Thurs started a flare. I am absolutely exhausted, the pain levels are high, stomach issues abound, it feels like the tropics despite air conditioning, my tongue is full of sores, a dull headache accompanies the fierce eye pain and blurry vision, and I am nauseous. And on top of it all...I have a toddler who has been spoiled all weekend with attention and now doesn't know how to play on his own. I can barely hold my eyes open. 

It didn't help that last night my husband and I got in a disagreement. Because I was left to think so long alone, I suddenly felt lonely, upset, and needing answers about our future. I was angry at his distance. I am frustrated by our position in his family's guest house, and the procrastination we both have been promoting concerning our future. Truth be told, it was a bad idea to talk just then as I was emotionally charged and nothing was really going to fix it. But I just couldn't help myself. I wanted answers. I want to know where we are going. I feel like such a failure. And at times like that, I always seem to try to fix him or us...or someone else. I feel helpless to fix myself, to end the ever present self loathing, and so I want someone to join me. And it ended with him not even wanting to snuggle. Ouch.

When I feel like this, so very tired and so done, everything seems wrong. In fact, I can barely stand to hear myself. I hate the my words, my whining. I'm tired of me. Stop the merry go round, I want off. 

I used to be so hopeful. So fun. I am an artist and a gypsy(not really but I love roaming free). I used to drop everything at a moments notice and run to New York on whim at midnight for a slice of cheesecake. I used to dance the night away at fun, crazy clubs. Wear unusual and crazy clothes. Ponder the workings of the universe. I used to paint all night and sleep away the mornings. I used to meet new people without even trying and they would whisk me away on adventures. Now I'm just a mom. Just a patient. Just an unreliable friend. Just a boring ball and chain. I am a shadow of who I was. When I look in the mirror, I just see a face. No heart. No spirit. A face. No wonder my husband has no interest in me anymore. I'm fading. 

Well, what to do now? How do I fix this? Maybe I don't. Maybe this is what life is like after. After the wedding. After the kid. After the illness. Life after me.

A little down for the count.

Today was a down day, pain wise. In chronic pain circles it would be an Amethyst day. That is a scale concerning purples (which incidentally is the color of fibromyalgia) and is called the Purple Pain Code. The scales goes from ligher to darker like this…
(You can read more here.)

LILAC -Light
LMA – Leave me alone!
and I add LMTFA as an extra level– LEAVE ME THE FUCK ALONE!!! (Cause really? How do these people describe this pain without swearing?Geez!)
So today sucked ass in the pain dept and so,  not coincidentally, it was also a bed day for us. I am getting better at moving by the afternoon (so the whole day wasn’t shot) but by night, I was a lump. Luckily my husband was up to the challenge and took The Cute out to a park while I lumped around in bed with the iPad.
As an aside: Might I suggest that if you have a loved one who suffers from any one of the numerous pain conditions out there…and you are looking for a gift….pool your monies and get them a tablet (and if you can, an iPad). I mean it. It’s been my saving grace for these past few years of hell. Light enough to hold even on a bad day and full of fun that can be rocked from a couch or bed. Oh and get them hooked on Hidden Object Games as a way of distracting themselves from their situation (but that’s a post all to itself one day). I know they will thank you, and consequently, me…

So worth it…

The Cute took a nap today.
And that meant an inevitable problem with falling asleep last night. Even though my husband lovingly laid beside him for a half hour.

I finally went in at 11. He was the picture of cute…his little nightlight gripped tightly as he hunched over a favorite book. My heart exploded a little.

I softly told him it was time to sleep. That I would help and snuggle him. He told me that Daddy had said “shhhhh” to him, why wasn’t I? I sighed and explained that Daddy was just trying to help him sleep like every night. And that he was shh-ing him because it is easier to fall asleep while quiet. And after we talk a bit now, we will also be quiet. But I know that tonight is different and I wanted to talk about that. About how sometimes some people have problems sleeping. Mommy knows that first hand. Daddy is lucky and doesn’t have problems like we do (hell, the man could fall asleep on a bed of nails in Grand Central Station) but Mommy understands. And I do.

Suddenly, I am five and in my own big girl bed…struggling to be good and fall asleep but unable. Crying to myself as I try to let go of the hurt and the screaming image of my father from the earlier fight before. I hate these nights. Trying so hard to relax but my little mind is racing. Inevitably ending with him raging again….scarier than during the day, yanking me from my bed and yelling inches from my face to stand up until I could “stop crying already and damn well go to sleep”. I can still feel the spittle on my little face. I can still see the rage contorting his features. The corner of his mouth glistening with froth. And then I would be alone, scared and crying harder. Slowly feeling the exhaustion creep in, but unable to lay down till he came back. It always felt like forever.

He didn’t understand. And he did what he always did when he was ignorant. He stomped it down. Stomped me down.

And I’m suddenly in my son’s bed trying, for all the world, not to sob into my little boy’s arms. And instead I promise him that I will always understand…that mommy’s daddy used to get mad at her for not sleeping..but his daddy and I will never be mad. And I realize I’ve said too much and so I am about to change the subject when he says…mommy’s daddy? And I say yes, I have a daddy too but you haven’t met him. He asks me if he lives on another planet. And I almost say yes but instead I say that he lives far away in another state (leaving out the part that he will probably never meet him). But with his ever social and loving heart he says.. “and some day I will meet him and then I can take his picture with my camera”. Tears instantly fill my eyes as I say, “who knows…you might some day”. And then I let it drop into kisses and snuggles, glad for the dark. Glad for the chance to hold him and in a way hold myself…the little girl rising up in my chest. And it’s only a few minutes before he’s fast asleep holding my neck tight.

And I think to my father somewhere in his own kingdom…ten minutes…you fucking bastard…it only took ten minutes, just a few soft touches and some understanding. He’s so fucking worth it…and so was I.

As always…predictably inconsistent.

I start a blog religiously. Posting every day, excited to share my voice and experiences with the world. And then the days flash by and suddenly it’s been a week of nothing. And then I hate myself and give up. 

Same for sketchbooks.

Same for play-dates.

Same for my life. 

But lately, I haven’t let myself give up. I still do the vanishing act for awhile but then I make myself try again. And again. And it’s slowly working. I’m making a better habit and a more consistent life. 

As for what you missed in the meantime? A lot of nothing. Loads of housework, another cold, a couple play dates, and a couple of evenings by the pool. A lot of nice nothing. 

Another one of my friends was diagnosed with fibro…or something like it and it begs the question…why is this so prevalent? I want to say that it’s an epidemic but I can’t since I don’t think all my friends and I share enough of the same symptoms. Nope. It’s lazy doctoring. They shoot for the quick write off instead of the delving deeper. They don’t want to see that as a species, things aren’t looking as bright. We are essentially disintegrating on the genetic level and since it’s a slow decline, why face it? If it doesn’t kill us, they why throw money at it. 

Well, more on that later. I am just glad to recommit to the blog. I will write tomorrow. I can promise myself that. And then make another promise tomorrow.