Christmas Adventure!

Well, it's that time of year again for the Baby Fold's Festival of Trees!  This year, we brought an additional element of fun, a tiny, stuffed unicorn known as Candy Cane--C. Cane for short.  Because, why not?  It's a Christmas themed unicorn, no less, so imagine a stuffed animal that loves snow even more than Andy does.

Well, first, we had to walk through the magical Christmas tunnel.

Magic Tunnels!  He was very excited.

And then we got something to eat and listened to some Christmas music, wrapped into a number of conversations as we ran into a good handful of familiar faces. It was Avanti's Night, so we listened to or tried to talk over some Christmas music while we ate.

Yay Christmas Carols!  He was very excited.

And then on to the decorated trees, wreaths, place settings, and more.

"Is he okay?"

This tree shared his name!  He was VERY excited.

Santa's sleigh made out of gingerbread?!

And he was very excited.

All kinds of talented people had put together some lovely trees, some weird trees, some charming trees, and a few things in between.

It's so tall and pepperminty!  He was very excited.

All in all, we had a wonderful time, taking in some holiday cheer.

My First Tattoo, Process and Reveal

Well, folks, we did it!  Mamma P, Andy, and I had lunch at the Golden Dragon, and then Mamma P and I wandered next door for our tattoo appointments.

Pre-Tattoo selfie

Mamma P came in with an exact idea and was done before the template was set to my skin, since Chad went to draw the idea out.  This meant that I had plenty of time to observe what was to come before it was my turn and to wander around the shop.

First off, the Illinois Tattoo Co has so many different things to look at around the room, not to mention the books and books of their past work.  I could see the smoke from the incense when I looked back to the main window.  And then to look at their stations, there was a lot to look at but for different reasons.  There was a sharps box on the wall and a container of nitrile gloves (latex gloves without the latex).  Each station had various chairs or what I'll call "resting options" for the various positions people might be in for an hour or so.  In addition every station had their own quirkiness of the items that decorated it (including Darth Vader in some oversized Air Jordans) and a container of their various colored inks.

I watched Walter set up his station for Mamma P, checking the placement of where the tattoo would go with her standing, to gauge how things would lay naturally, setting the template and resetting it as much as necessary to see things lining up just right.  A sharpie for the general idea, a template for the actual path.  The template turns purple with your body heat, supplying the outline off of what the artist has intended, to help keep spacings and lettering consistent and even.  Check, recheck, all parties agree, and then it's time to get comfortable.

I was really glad to have watched the process before it was my turn, since I couldn't see anything that was happening behind me.  Tiny cups of ink are laid out, depending on the relevant colors.  The machine itself is set up and tested, with different RPMs and setups for specific purposes.  The affected skin is wiped down with alcohol and shaved (unless it's like an inner lip tattoo, I assume) so that even the vellus hair is out of the way.  Another wipe down or two to keep the area clean.  Then, it's foot to the pedal and holding your breath--pedal for the artist; holding breath for me.

Mamma P's came out lovely!

Evidently the liner moves at a slower RPM and has less needles.  This part was the worst of it, in my estimation.  Mamma P's report was that it wasn't that bad, except for a few places that stung a bit, such as right where the tendon juts up.  I was curious to see how this pain would compare to other pain that I've felt in my life, whether it wouldn't be as bad by comparison or where it would put my brain as part of that.  It felt like a stinging burn, most reminiscent to me of when you get an IV that isn't in correctly, and the saline push ends up flooding under the skin, a very particular sharp sting.  I could feel my body tensing immediately, and I had to remind myself to keep breathing, making exaggerated breaths to help me find a pattern again.  As expected, some areas hurt more than others.  But it was in bursts.  He frequently repositioned his hand and my skin in some different ways, which meant that I could recover briefly, but with the understanding that he would stop if/when I needed a break--I took him up on this twice in the two hours.

Still, though, about two minutes in I definitely had the thought of "what have I done?"  My body wanted to leave but was also frozen in place.  That was a flavor of familiar that did not sit well.  So, to recap, it stung, I couldn't see what was happening, and it was putting me back in my trauma space--that was a lot to take in.  It started to get better as some of the adrenaline started wear down, where I could feel myself trembling but still calmer, making faces when certain parts were particularly uncomfortable but otherwise handling it fine.  Once we got into the shading part (faster RPM, more needles at once), the process didn't seem to hurt nearly as much, though still stinging.

Here was the key difference--I have endured pain out of choice because that is what I needed to do to get better.  It was ugly but healthy; a hard decision but a necessary one.  This kind of pain was different.  I made a choice to sit in a chair for two hours and have needles pierce down to my dermis not because it was the lesser of two evils.  I had the autonomy to choose for my own body for something that I wanted to.  It was cathartic, choosing pain in order to make something beautiful.  And the message is also another expression of radical self-acceptance.  

Anyway, without further ado, here it is!

The redness should go away eventually
Also, I opted against putting my in-progress pictures up
Because they showed more butt crack than I wanted to display today

You know when you're going through a store that has appliances and whatever else and they have a placard up about how the floor model is there to show the look but not the function?  Well, I'm having a sense of humor about my body, that since my colostomy there are parts that don't work "normally."  The text of "For Display Use Only" pokes fun at that and myself, recognizing the reality of the situation without wallowing in it.  That text is encased in something unique and beautiful.  I want to think of myself that way, that I have some things that can be seen as broken and nonfunctional, but speak some of those elements through a particular perspective and humor, that it can become something beautiful and unique.

So, long story short, I'm pleased as anything with my new tattoo.  The couple of days after, it felt like a bad sunburn--sensitive to pressure and heat--but this was at least a kind of familiar pain in that sense.  The skin is a little raised still around those fresh lines and warm to the touch, but I'm tending to it as instructed:  keeping it clean and moisturized with some very gentle soaps and products.  Specifically, I was instructed to "treat it like an open wound," which caused a few sarcastic remarks to ping off in my head, considering I have a vast experience with treating open wounds on myself, but none of these were helpful.  I'm comparing it to wearing a favorite outfit or my Gryffindor panties on days when I want a little extra courage to myself, like I have a small, secret boost of power.  

Chad did a fantastic job taking the idea and adding the beautiful detail and shading in his own style.  I had a great experience and left with a wonderful piece of art that I can carry with me.

Meds Day

Every eight weeks I go to my doctor's office, get set up with an IV, and receive a dose of my medication.  This is one I've mentioned before, the one that's eight grand a dose (noting that the eight grand does not include any of the IV materials, such as needles, saline, and tape, in my doctor's office).  I've been on other medications with similar schedules, and typically when it's time for a new dose some of my symptoms pick up a bit.  Right now, this includes some additional caution in what I eat since I'm a little extra sensitive to food, meaning that I'm more prone to stomach upset, nausea, and pain/burning feeling, so overall I feel more anxious on the whole, wanting to protect myself.  This translates to no alcohol, little cellulose or other fibrous foods, lower acidity, lots of water, and nothing that is "iffy" in how my body has reacted to it before.  My skin tends to freak out a bit, meaning that I have a few breakouts, and it tends to feel dry and cracked more easily.  But most noticeably, I feel my energy waning, like in bed by eight-thirty kind of tired.

Some are worse than others, as far as how I feel when we get to the low end of that last week of medication.  There are some weeks where I don't even realize until I check my phone and notice that it's on my calendar, where I thought I was feeling tired maybe because it was a long week.  I have a blocker on my schedule so that I can take a "creative lunch hour," where I take my hour for lunch plus about forty-five minutes to get the infusion.  The nurse starts my IV, mixes my medicine in the sealed bottle, and then adds it to a bag of saline.  Once that bag is hooked up and plugged in, it takes about half an hour to run it through completely and then I'm good to go for another eight weeks, having attended to my scheduled maintenance.

I give myself permission to feel crappy on these days.  It's a pain to disrupt my week to drive over to my doctor's office, patiently allow someone to put a needle in my hand, then sit there for about an hour, drive back to work, drive back across town, and then try to get back to my work day.  So I grant myself some kind of a treat, whether it's coffee or whathaveyou, and show a little extra compassion to my body those days.  In a way, recognizing my meds days is a way to also schedule some compassion for myself, pausing from my normal week to listen to my body and treat it with kindness.  It's nice to give myself the freedom to feel blah, where I can say "it's a meds day" and have the weight of that understood.

...Only that didn't happen this month like it was supposed to.  Every year I have to get a predetermination (which is very different from a prior authorization, apparently) on file for my doctor's office, that they don't want to give me my eight thousand dollar medication without some assurance from my insurance that they're going to cover it.  On the one hand, I appreciate that because I don't want to be on the hook for a collective 48K worth of medicine for the year.  On the other hand, they literally have the medicine in a cabinet and could give it to me, which is frustrating when it's right there.  

The re-applying is not a surprise--my doctor's office handles these every day for their Crohn's and Ulcerative Colitis patients. Last week, though, I had a couple of voicemails from my nurses the day before my medication appointment, hemming and hawing about troubles with the insurance company.  So, I called my insurance, too, and half an hour later I knew exactly what parts of paperwork they were missing and called my doctor's office back.  

I know how to talk to my insurance company, to get the answers I need and move them to the next body.  I'm able to do that to help myself.  I'm pleased to have these skills and simultaneously furious that I had to do it, that I was making these calls the day that I was supposed to be getting my medication.  In fact, when my insurance contacts asked when I was due for my next infusion and when I told them "today" they were surprised and explained how I could get expedited predetermination, because I bothered to ask if there was such a thing, and these were the same names that my doctor's office told me they were working with.  The people at my doctor's office, I think, are new to this role, even made sure to tell me that the insurance company people were rude to them when they were calling on my behalf.  I did not care if they had a bad experience--I wanted to know that I was going to get the paperwork in to get my meds.  If I could steal a stack of coversheets and have it look like it was coming from an "official" fax number, I'd get a copy of my medical records and take care of it myself.  I'm angry at my doctor's office for not starting this paperwork soon enough.  I'm angry at my insurance company for the red tape.  I schedule out my appointments several months in advance, so this upcoming infusion was not a surprise.  I just wanted my damn medication.

The medication that keeps me out of the hospital.  The medication that keeps me working so that I can qualify for the insurance to pay for the stuff.  The medication that keeps me from feeling like shit.  It's incredibly disheartening to hear your insurance company explain that they're trying to sort out, and I quote, "whether the medication is medically necessary."  Medically necessary.  I'm talking to people that have little to no medical training that get to decide whether or not they're going to pay for the medication that keeps me healthy and alive, because they have a checklist for some specific pieces paper with boxes and signatures in the right places.  And if it gets denied for some reason, it goes to a review board which also are not required to have any medical training and see a small snippet of my medical history to decide whether or not I get to be healthy.  If you think I'm being dramatic, here's a recent example.  It's degrading to have to beg to get the care I need.

I know what can happen when I don't get my medicine, and it feels like you're slowly wasting away as the medicine wears off.  I feel my energy draining.  Every time I eat something, I feel a low, particular burning in my stomach that is the wrong kind of familiar.  I feel constantly nauseous.  Emotionally, I'm three kinds of messed up.  Not only am I back in my trauma space, but I'm, appropriately, mad as hell.

I know what steps I need to take care of next, what calls I need to make.  I'm pretty confident that I'll be predetermined soon, if only because I dragged everyone through--no one is going to have the same urgency about the matter that I do.  And I absolutely will be calling both parties next year, about a month before this predetermination is supposed to hit again.

But there's nothing I could do for it over the weekend.  Hopefully, I'll get my medication on Wednesday, only a week late.  Time to cuddle a unicorn, sulk, and just get through.

My First Tattoo, Scheduling and Designing

So I had mentioned that part of my celebration of having Melvin for a year was getting a tattoo.  This was a new thing for me--most of the knowledge that I have about the subject were movie stereotypes, Bad Ink, and Inkmaster.  Well, that and friends with tattoos all echoing in different words that as soon as you get your first tattoo, you start planning your second.  

That means that I started researching as most every millennial woman does--looking for recommendations on Facebook.  Well, that and hunting for a few articles of suggestions on the internet.  What I gleaned out of that was that it was important to research your artist, to make sure that their style meshes well with your idea, and to schedule an appointment.  Most of the recommendations that I received through that Facebook conversation or in person were for places outside of town, so I also went to Yelp to see what was around and well-reviewed.  

Once I narrowed down a place and found which artists work resonated best with me and what I was aiming to do, I called up the shop.  I started off by stating that I was hoping to get a tattoo and identifying which artist I was looking at.  Then, she asked me for some details about what I was thinking about getting.  I asked a lot of questions, explaining that this was my first tattoo and thanking them in advance for their patience.  Ultimately and understandably, her recommendation was to come into the shop and bring some mock-ups of my idea, if I had them.  

Of course I had them.  And I had some time in my schedule to run by the shop two days later.  I talked to the person at the front desk and it happened the artist I was looking at was available to discuss some of the elements of what I was looking for.  I was gently led to understand that the idea that I had would not necessarily translate well to skin, without being much larger and way more expensive than I was expecting.  He did not want to give me something that would look muddy or blow out my budget or otherwise just not represent what I wanted, which I certainly respect.  For context, my idea was to have some select words in a florid script surrounded by black lace. (see below)  All of those tiny, skinny, intersecting lines, yeah, that makes a flavor of sense to me now why that wouldn't work, but I had had no context previously for what was and was not possible.  I asked several more questions, looking to get a better understanding of what did and did not translate well.  The conversation actually steered me back toward elements of my original idea, a frame around the words I was hoping to use looking more like a photo frame.  

I was leaning toward the right, but was curious if

as much detail on the left was possible

So I sat down and scribbled out what were my "Must Haves" regarding what I wanted permanently etched on my body.  

1. 1.  Only black ink, no color
2. 2.  My wanted text
3. 3.  Roughly the size that would fit between my stealthbelt (which holds my ostomy) and my pants
4. 4.  Some kind of vintage look
5. 5.  Within the budget confines we agreed on

I revised my idea and went back to the shop with a few different mockups.  I went to an easier font and a simpler frame than complex lace, going toward a vintage frame.  Once we agreed on something that was a much better starting point, I put down my deposit to reserve my time which would contribute toward my overall total.  And then I had several more questions--what I had in mind would take about three hours, I found out what position I would hold (and that it wouldn't put too much pressure on Melvin for too long, and, no, I did not have to prepare my skin in any way.  

And now we're going for something more like this in an oval shape

And bonus--my mother-in-law is planning on joining me, getting her first ink, too.  What a delightful bonding time!  I'm slated, assuming that I am healthy and barring unforeseen disasters, to get my tattoo the day before Thanksgiving.  Very excited!

NaNoWriMo and Shitty First Drafts

It's November again, which means that it is National Novel Writers Month, affectionately known as NaNoWriMo.  The idea is to get people into writing, whatever the story is or whatever words need to come out, getting that initial push of words so that you have material to work with and really shape into something better.  It's a tough thing to do, write while caging your inner editor or feelings of inadequacy ("this is crap; what the hell am I doing this for?") and to continue to write anyway, all in pursuit of writing 50,000 words in the month of November.  It's a tough goal, but I've managed to complete it two or three times.  Sadly, I don't feel that I have the time this month to do attempt it this year (particularly while working full time and taking an online course), but I still carry some elements with me that were important perspectives to writing and creating art in general that it taught me.

Here's what I've learned in the process:

• Delete nothing--if anything, rewrite the scene later but leave both in.  The "wrong" version can be excised later.
• Even the best laid outlines will find surprises as you start to sit down and write.  I've had so many places that I wanted to get to, but I realized a substantial plot hole or an element that just didn't make sense which needed explaining as I was writing.  Write yourself through it, thinking through elements as you transcribe them.  The cleanup can happen later.  Similarly, don't be afraid to let the story take control.
• For myself, I work best with a loose outline--anything too detailed is going to frustrate me or otherwise restrict where elements could go.  This also happens to be how I prefer to plan vacations.
• Sometimes you have to kill your babies.  What I mean by this is a particular idea or character that you're really attached to may not be the best fit for the story.  If the story is negatively impacted, this can mean that this isn't the right arena for that character or idea.  Write it down to save it for later.
• It gets a little easier to cage that little voice in the back of your head when you have objective goals.  Hell, turn it into an opportunity to have your main character talk back to you, either as a peptalk or to voice those concerns that you have.
• Everything is research.  This means that weird conversations and some even weirder search history is going to happen.  And it's fun to explore these elements and look at our world a different way, truly.  Embrace it.
• Being in the practice of writing/creating art is important, even if you're not showing it anywhere currently.

Everything starts with a shitty first draft.  I have drafts of pieces that absolutely disgust me and will never see the light of day.  But I had to make those to find what I really wanted to say in something cleaner or work through a problem that I was struggling to articulate or otherwise find the source of the real issue.  I have had long, complex sentences that rehash the same thing from the previous sentence.  I have used more semicolons in one paragraph than anyone should, winky faces aside.  I've fallen into hackneyed phrases that break the mood.  I've organized things in such a way that the elements were incomprehensible.  

But I made a draft.  The pieces were there.  They could be reorganized.  They could be prettied up.  They could be altered to better fit.  I could find the gem of what I really wanted to convey and rework all other pieces around it, perhaps transplating it into different materials.  I couldn't do any of that if I never set words down to paper.  

The idea that's been floating in your head, the problem is not that you're inadequate in expressing it:  the problem is that you have good taste, and it's hard to see it rendered only partially.  It takes patience and grace to fully realize what you envisioned.  And sometimes, when it's on a page you may realize that some elements that didn't translate as well from your mind could be better served differently, that keeping the integrity of the idea is more important than this specific detail or that specific detail.  But you've got to start somewhere.  Sometimes, you don't realize how to best transcribe that idea until you show a friend that basic level, talking through the idea with them for some additional perspective.  

But you've got to make the shitty first draft first, and allow yourself the grace to make a shitty first draft.  Embrace the shitty first draft.  The draft is shitty, but you are not.  A shitty first draft is not reflective of anyone's ability to draw, write, paint, sculpt, or whatever else.  Practice will only improve what you can do, will only help your range of expression grow as you try new things and give yourself room to fail.  It's fully possible that you may clean it up and it's still crap--you still made art today, and you will be better practiced to make something better in the future.

Andy tried a process in this in the beginning of this year, on his YouTube channel with the 100 Day Music challenge (here's the starting video), which included voice lessons, accordion lessons, and one killer cover of "Hallowed Be Thy Name."  Through the process, he expressed some of the same lessons that I had learned, that being in the practice of making art was good for his heart in many ways and that the hardest part for him was getting over the hump of accepting that it wasn't always going to be perfect and that it didn't have to be to have merit or to be worth sharing.  Andy had to experience it himself to understand it, just as I did.  

Go make some bad art.  

Happy Anniversary, Melvin

It has been a year.   I've had my colostomy, now, for a year.  How the living hell did that happen?  I think last I blinked it was April.

Yes, I absolutely did make a tiny party hat for Melvin.

I've hit a number of milestones.  I've hit a number of walls.  I've oscillated between radical self-acceptance and despair, feeling empowered and embarrassed in turns.  This is another one of those moments where I affirm that while I am not my disability, my disability is very much a part of who I am, affecting how I frame the world.   I have a LOT of feelings about this that I'm not sure how to process yet.

So I'm leaning toward celebrating this permanent change to my body by making another permanent change to my body:  I have an appointment to get a tattoo a little later this month.  (Yes, of course I will be making a blog post about the process.)

I'm also looking into Lasik for next month, potentially another permanent change to my body. 

It's maybe a weird kind of celebration.  Part of me is certain that I should adamant about preserving as much of my body as I can, rather than subjecting it to lasers and needles and ink.  But this process has always been about making my body the best that it can be.  I have been working toward that goal in many different ways but always toward that goal.  The image that I want to get is at least in part about the sense of humor that I approach my ostomy with, another declaration of self-acceptance. 

And these are changes that I am making completely voluntarily.  Not that my ostomy wasn't my choice, but it was a much more necessary choice.  I definitely chose my ostomy, but the other option was to continue to suffer needlessly, which wasn't a choice for me.  These other options of permanent change are wholly up to me, particularly the tattoo.  It's freeing.  I can make some big choices because I want to, not because it's the best thing to do in my circumstances.  I make a lot of other big decisions (where we want to live, how to best meet my professional goals, how we want to approach our financial goals, etc.) by weighing the list of everything, finding the most peace when I realize that I will probably have some regret regardless of what I choose.  I'm not saying that there is not a possibility for regret either in choosing to get a tattoo or Lasik, but not doing it doesn't have nearly the same kind of regret as other significant choices I've had to make.  I'm excited to have completely different consequences, if that makes sense. 

I've learned a lot; there's still so much more to process.  It's going to be a life-long adventure. 

Happy Anniversary, Melvin!  And now I have an excuse to eat cake today.

Technically, Melvin gets to enjoy cake too..?

By all that is Good and Holy, Vote

A short rallying cry today:  my friends, please please please vote.

I know we're tired.  I know that we won't miss seeing all these blasted ads and recycling half of our mail because it's mostly political flyers.  I know that if you saw just one more email from a campaign asking for money you were thinking idly about giving money to the other just out of spite (not that you would).  I know that it's tough to turn on the news (app, TV, whatever) when you're not sure if you're ready to be angry right now.  Priorities are all out of whack.  Our representatives are not holistically representative of who we are.  And there is so much pettiness and insensitivity.  People get away with more than we would have believed possible.

We're exhausted.  It's still important.

I've talked to people that believe their vote doesn't matter.  I've also seen the numbers and instances where the values are cut by the narrowest margins, literally down to a single vote.  And I've seen people buy lottery tickets with more optimism in winning than voting.  Folks, if you can buy a lottery ticket with odds of three hundred and some odd billion to one, twenty minutes of your time voting can affect your life far more than not winning the lottery today.  It's one of those situations where even if it's "not going to matter," what do you really lose by doing it anyway?  With the lottery, you're out two dollars; with voting, it's just a few minutes out of your day.  If it "doesn't matter," then why not do it anyway?

It's hard not to feel discouraged.  I've been cutting news consumption out of my day to allow myself to recover, but I'm careful not to waver on elements that are still important, such as my firm belief that all persons deserve equal rights--Muslim, gay, trans, black, female, Hispanic, disabled, and all else--and that we must be firm against those that try to insist otherwise.  It's not being uncivil to stand against injustice.  There's a huge difference between attacking the person and attacking the problem (some discussion here in previous posts).  It is okay to disagree with people--someone that is disagreeing with you is not specifically attacking you or persecuting you.  We can be above this false-dichotomy bullshit, along the lines of "if you don't agree with me, you're unamerican."

But I digress.  There's a lot to be angry about--your anger and your feelings have merit.  How you channel that anger, though, that is what will show elements of your character and invoke change, for better or worse (further discussion here and here).  Keep courage, my friends.  You're stronger than you know.  Voting is the least you can do, putting a definitive voice out there to join the throng.  That may be all that you can do, depending on life circumstances and what you need to do for your own self-care, but please do it.

Hang in there.  I suspect some things are going to get worse before they get better, but we can find each other now, hold each other up, and challenge one another to be better.