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Pain @ MindSay


Sweet sweet partial relief

I took my third shots of Enbrel and methotrexate this weekend after the two week hiatus. Before I really didn’t think these meds were doing anything for me, I still felt in pain and achey BUT… it’s funny how your brain adjusts to where you are and how quickly you forget how bad the BAD days actually are. After being in horrendous pain and swelling from not being on the meds and then starting them back I see how much of a difference they really were making. I can type without instant pain – I might get sore after awhile but I can type without it being ouchy, something I didn’t have last week or the week before. Chopping hard veggies still is a strain but not impossible, I can hold cups with confidence that they won’t fall out of my hand, I can hold my phone to my ear and talk without my hand cramping. Those “little” things make it s o much easier to pay attention to life when you are not dealing with endless, soul sucking pain and reduced agility. 


I am writing this so I remember. Next time I gripe about hair falling out or sun burning me too quickly or a little sore joint – I need to remember that it can be/has been a lot worse and could be even worse than that. I am lucky right now to be able to see a doctor who is working with me, lucky to have insurance which covers the obscenely expensive medications that I would not even try had I not had the insurance. Incredibly lucky to be salaried and have a kind employer during this period of frequent absences – either to see doctors, or for medical emergencies, or being sick because the meds made me vulnerable to more illness, death of my father. All of that in a short time would cause me to lose my job at some places I have worked – plus being paid for time off that you didn’t choose or want to take off is an incredible thing, eases my mind and makes it so I CAN go to the doctor instead of worrying that we won’t have money for groceries because I’ll be missing the hours from my paycheck.


Then I think of all of the people who have this disease or other high-maintenance diseases – those without a support system, no insurance, or maybe insurance with ridiculous deductible, insurance that denies access to meds because they want you to try something cheaper for a few months (while you suffer) before they let you have a shot at a very promising treatment that will keep you physically well enough to work. Those who want to work but no longer can because they didn’t get treatment when they needed it (to prevent disability, deformity and loss of function one must be treated early and aggressively). I somehow managed to be in the right place at the right time, my coverage could be lost at any time if the laws are changed. My pre-existing conditions make any insurance under the prior way impossible to obtain. I have already seen how quickly I can go to loss of dexterity and ability, how painful I get, the only reason I limped through those days was the aid of painkillers – if I had to stay that way for months then permanent damage occurs – that scares me! All of those who have no choice but to face down this disease or others like it with no aid are brave for pushing forward.


Worlds Apart
And the man and his wife were both naked, and were not ashamed. -Genesis 2:25

I reread that one recently. Doing a chronological study of the Bible this year, one of course starts in Genesis. It grabbed my attention, because that's what I'm doing with my heart. "Captivating" gets me naked, and I am ashamed.

I had a ritual in high school. At the end of each day, I would turn off all the lights in my room but one, put on Bruce Springsteen's "Worlds Apart" on repeat, and punish myself for whatever I had done wrong that day. This involved seeing my unclad body in the mirror, and using my nails to draw deep scratches everywhere I could, one for each offense I could remember from the day. Pain was the only time I felt in control of anything. I had some idea that I was purging the badness from me, that over time, since I used my own body to hurt myself, myself would no longer do bad things but only what was good for my body, and when I reached that point, I would be whole.

(This was a very distant future, and since I fully expected that I would actually go through with killing myself before I reached majority, I did this more because I felt like it was something I had to do, keep the badness from raging out worse, than any hope in a future.)

Seeing my body was a form of punishment. My sisters were very slender, and while I understood the logic of not comparing myself to Disney princesses, movie actresses, or even the thousands of blonde women in this land of Norwegian descent, it made sense to me that I could look at the other products of my parents' genes as an example of what we were supposed to look like. I didn't look like them because I had done something wrong.

It was a long time into our marriage before Rick managed to get the idea into my head that he found me more attractive than my sisters. In my experience, EVERY man thought my sisters were more physically attractive, and I could accept that there were multiple facets of attraction, so it was okay if they 'beat me out' physically - none of us three was interested in a man who was only interested physically. Once my husband managed to convey this to me, I was a lot more comfortable with being physically naked.

Soul-naked is different. I can get soul-naked with God, because a) He made my soul, and b) there is nothing hidden from Him. He knows how it started, He knows what I've been doing, and the best thing in the world is getting intimate with Him. I can bare myself with Him, and be found, and loved, and satisfied. 
I am also aware that I am a first-rate wreck, that the deeper one goes into me, the more mess they find. I'm aware that some of this shows up on the surface, but not most of it - that's not how people work. But getting soul-naked with someone who WILL be surprised by some of what's in

I kind of wish there was some sort of written agreement, as part of our marriage vows, "Do you take this woman, with all her wreckage and baggage, understanding that she's a wreck of a sinner and it's only by the grace of God and no merit of her own that she can even stand up and breathe..."

"But when I look into your eyes, we stand worlds apart."

Obviously, my plans as a teenager were death. I really did not plan for that song to be prophetic about my own marriage, but it's shivery-scary that the chosen theme song for punishing myself with my nakedness ends up describing the result of loving each other without being able to get soul-naked.

I told Rick last night, "I think I'm going to have to read Captivating now." Why? Because it's scary. And hard. And it's not supposed to be. The couple who wrote it are not Stephen King; they did not write this with the intent to raise fear. 
There was a time, whenever I encountered something that was hard and scary for me, but wasn't difficult for other people, then I just had to go and do that. (Note: This rationale only works if you live in a pretty sheltered environment. Once you see how many things in the world there are to do, you have to start developing some discretion about the wise use of time.)

I'm wrestling some with the idea that there is badness in my heart, and I'm not supposed to give in to that badness - but I'm realizing that that doesn't mean stifling it somewhere inside me, that means pulling it out and giving it to God instead of pulling it out and giving it to myself.

Sifting through the ragged thoughts and jagged breaths of this past weekend leave me truly disappointed that I must rely so much on my medication to keep me balanced. Anyway, in other news...

I currently work at ZENI kinetic, a 3D print shop, where we build our own printers, make our filament and do 3D scanning. My boss is Nicco, I see him as an older version of myself, if I were more volatile than I am. There's also Zach and Anna, they work up front, Devin, our Webmaster, so to speak. Micha is business relations, if I were to put a name on it.. Aaron, Jeremy and one other guy, I forgot his name.. they are the engineering and build side of things.. That's really our team lol. Anyway, I get along with all of them pretty well, it's nothing hard to go through with them. I handle Shipping and Spooling, it's my area in the business, though when I first started, I had no knowledge of how to fulfill these duties.

I ran into Zach the night I ended up sleeping with Katie, the mutual friend between myself and Ria. To be honest, it was rather enjoyable and something I figured would happen at some point, but didn't expect it that night. I helped Anna move a giant mirror she owns and got tea with her afterward. I feel we're great for each other but terrible for her relationship, as is the case anytime I'm introduced into a situation involving couples and one on one time with the woman... I just seem to bring their interests to the surface and cause them to reflect on how much they want to leave who they're with..

On that note, Anna has already been expressing a desire to leave her bf and have me stay with her when she gets moved into her new apartment, rent free, just the cost of sleeping in bed with her lol. You see, we both have the issue where sleep comes easier with someone in bed to cuddle with. I wouldn't mind getting to know her better, and aside from Michelle, she's probably the one female I can see things going somewhere more than bed with. The night we moved her mirror and grabbed tea, I met her boyfriend Kelly, a man-child to the level most women think I am, but a respectable guy nonetheless. Anna is definitely something else, I look forward to work because it means learning new things, as well as getting time with Anna.

Aside from that, I mentioned in my last post that Savanah had bought me a rather expensive James Jean piece, Seasons, which I wanted to buy for myself but was unable to... Since then she's been more and more focused with her bf, still can't remember his name, Logan I believe... Anyway, she says she doesn't want to be with him and she doesn't want to marry him, which is the direction he wants to go. She gets the nerve to leave him, then decides to pretty much cut me out of her life... I really don't get her, let alone women.. I have not even really tried to get a hold of her since she started acting that way, she can make her own choices and has her own path to take.

I have court January 9th, my pretrial and when I meet with my Public Defender... I am so exhausted from life being a constant cluster fuck to another.. Speaking of which, my body has been in a lot of pain lately, both sides just constant bruised feeling, as well as my shoulders. The normal shooting pain is still alive and well as well, of which doctors have still yet to identify. There's also an aching and longing in my heart, I just can't seem to get past Jordan.. seems like I see her more and more often theses days.. the reminders are everywhere and I can't seem to help that.

"We ALL carry our crosses... Or we are crushed beneath them... It's the only reason I don't blame the life I have on the genetic disorders I have; In reality, it's not an excuse to be a screw up, so carry your cross or be crushed, because I don't let mine crush me. What's your excuse?"

 I posted that a couple days ago on Facebook, it was probably right in the middle of my breakdown. Time to reset the counter, [01] Day(s) Since Last Breakdown... Lol. On a high note, I picked up a broken Sony VAIO at the pawnshop down the road for pretty cheap, and fixed it, it's my new main.

Later days,


PS, the night I got tea with Anna at Salt Lake Roasting Co, I think we were closer than we should have been... there was lots of being more forthright than typical, as well as just being physically close in general, for no real reason... And there was that whole thing where she said I am her first choice if things don't work out with her and Kelly. Weird, right? I'm also terrible at discerning between being nice and flirting... Lol.

Love and Motivation.
I think I fall in love to quickly, too easily.. and because of that, it leaves a great sadness in my heart when it's over.

Mind you, I'm not talking about the love I had with any exes or family, nothing of that sort. I mean the kind of love you feel instantly when you see something utterly awe inspiring for no reason other than the way it makes you feel. When a great swelling and opening happens in your chest and you cherish the smallest of details, that kind of love. I find it when I read a great book, hear a piece of music that moves me, when I see a woman I find beautiful, regardless of measurable beauty to anyone else.. I find it when I come across some memento of the past that was made with such great care and surgeon like precision from the hands of someone that cared. 

I find this love in so many things, so random of things.. and none of it can truly exist, none of it is lasting, yet the hollowness of it's inevitable departure, I will feel for some time after it is gone.

I also fall in love with women I meet in passing sometimes in person, other times online, I admire the intricacy in those fine details they put together, just hoping to catch the eye of the person they're with, yet I know I will never again be the one to breakup a couple because of love. I did that throughout my youth, never intentionally, but it happened nonetheless.. I just fall in love with these women and show it, and they leave who they were previously with.. Nevertheless, I do feel this love for strangers which too brings such pain when the moment has passed. 

It is through love and loss that I might find the most maddeningly deep motivation for improvement, a sort of strive for a "Monte Cristo-esque" level of control and unparalleled manipulation of the world around me, for which I have found as profoundly destructive as constructive for myself... I've learned that limits are a good thing for me, because without them I will surely break my body in attempts to surpass intangible enemies I find in the past. My largest source of motivation comes from the many trophies and scaring material which has set up residency in my life, these reminders of the past, of loves and losses I cannot hope to recover.

Even tonight, I found a few that have made me want to get up and run out the door, like I'm chasing after the image of what I was left for, being only strides away.  These reminders and guilt trips, however intangible, give me a benchmark for which I strive to surpass, be them people or ideas. I want, no, I must be better, I refuse to feel inadequate, for whatever reason, though I don't know why. I'm not concerned with being the best, just being better than the past... Motivation is probably my only combatant against the depression, I really feel the medication is only a band-aide, that the true healing will never happen and the only hope I have to get through tough parts is by being motivated for further improvement.

I have broken my wings, yet, someday, I again will fly.



A long time ago

When you were a child,

You read fairy tales

Thinking that a handsome prince

Always saves the princess.

You dream of your knight in shining armor

Running towards you,

Sweeping you off your feet.

You dream of your happy ever after.

Sadly, the truth is, you may find a man to love –

He is flawed,

He may hurt you,

He may break your heart.

Love is not the rainbow-colored world

Populated by care bears –

It is a battlefield

Filled with challenges.

Love is not the sweet colorful candies

Rather it is bitter-sweet dark chocolate

As against the all too saccharine taste

Of cotton candies and whatnots.

A story that started with only two people

That began with a wonderful promise

May turn out to be a lie

And break your heart.

As a child, you believed in fairy tales

But growing up, reality slaps you hard in the face

And marks your soul.

Fairy tales are not real.

The truth is the pain you are feeling

When your heart was broken

Into a million pieces.

It hurts like hell,

Like dying over and over again,

A vicious cycle.

There are no fairy tales

And the princess has to help herself

To mend her broken heart.




To the ice queen


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