Why I Keep Bringing Up Ferguson and Annoying Everyone

Because it's a horrifying miscarriage of justice and just a small example of racial inequality and police brutality IN 2014. NOT 1965, 2014.

Because black kids, ages 15-19, are 21 times more likely to be fataly shot by law enforcement than white kids in the same age group.

Because as a white woman,  if I'm wearing a hoodie and have my hands in my pockets, people just assume I am lazy and didn't shower that day (they would be right) and not that I have stolen something and/or are carrying a gun.

Because it's somehow ok for white people to own guns, 2nd amendment ya'll! But black people who own guns are obviously criminals.

Because self segregation still exists in most of the United States.

Because I live in a conservative area of California and I'm tired of hearing about how the people of Ferguson SHOULD respond to an obviously wrong grand jury decision. Yes, there should be personal responsibility. Yes, it would be better if people came together and supported and built up their communities. Because peaceful protest SHOULD WORK and sometimes it doesn't.  People get pissed. People make bad decisions. This doesn't negate the fact that an unarmed member of the community was following police instruction and was brutally murdered by an officer who took an oath to protect and serve. That, my friends, is still a fact... no many how much looting and burning occurs.

Because in the United States every citizen is innocent until PROVEN guilty. That is a unique facet of our justice system and a constitutional right that sets us apart. You know when that doesn't matter? When the person proven innocent or guilty is already dead.

Because Trayvon Martin was only 4 years older than my son when he was shot and killed for No. Fucking.  Reason.

Because.  Just,  because.

MSK, You're Breaking My Balls

Metaphorically,  of course.

So, I have a wonderful new primary care doctor.  I have mostly adequate pain management.  I have a good nephrologist and a so-so urologist.  I may get to be in a clinical trial soon that may help. My kidneys are not good candidates for the two experimental surgeries available for this condition and would most likely make things worse. I can't get a transplant because my body would most likely either reject it outright or begin calcifying the new one if it did take. Surviving on one kidney is a last resort for me, not something I want to contemplate. One day I may be on dialysis. I will do whatever I have to to stave that off, but it may happen.

Some days, I'm really good about my diet: no sugar, very little protein, nothing high oxalate.  I've given up my beloved tea and drink more water than should be humanly possible. I take a probiotic, am trying out some herbs that may help with keeping reoccurring infections at bay and choke down apple cider vinegar daily.

Some days,  I'm not so good about it. I still try to keep my sugar low and definitely no caffeine,  but the siren song of french fries are too much to resist. I snack on bacon at work. I can't force down another freaking banana.

I would eat better if I could cook more, but I feel mostly awful most of the time, so I don't cook much.  I struggle through work and then I try to lie very still for awhile so my body will calm down. Sometimes it works.  Often, it doesn't. 

I'm exhausted,  all the time.  I wake up exhausted. Exercise?  Yeah. I try to do some yoga. Occasionally I'll try to go for a walk. But everything hurts. And laying around makes it worse.

So the serpent swallows its tail and the cycle begins anew.

I do have good days. But, most of my time is spent carefully planning out my day so I don't have to do too much. And there is always too much to do, too many balls to juggle.  (See what I did there? Another balls reference.... badda bing!)

I hate this disease. I hate that I have it, I hate that I can no longer power through it. It's making me hate my own body and that is just not healthy.

I'm sure stress & grief are a big factor,  but there is not much I can do about that. I was pleased that after totalling my car this week I was able to center myself after only a few hours of sobbing and worked through a panic attack without drugs. My chiropractor/wise woman/awesome friend did some energy work on me and was really proud of how strong my center has become. 

But, I'm having flare ups every 2 to 3 weeks.  It is maddening.  I may be biased, but I think I deserve a little break.  Just one. Universe? God? Ya listening?  You've given me enough to handle for now.

Let's pump the breaks big guy, deal?

Grace

Telling our story is cathartic for me. So, when I find someone I can trust, I tell it. Over and over. I don't know why it helps,  but it's a little like letting some steam out of an always boiling pot.
Sometimes,  when I don't feel I can trust the person or when I simply don't feel like telling it all again. I give the abridged version: my husband got sick and he died.

Something I've had to try to come to terms with is how fast it all happened... and sometimes I wonder if people think he just gave up. It shouldn't matter, and it truly doesn't, but if it is someone who didn't know Jason it hurts to think that they might be thinking "Wow, he didn't even try?". To be completely honest, I've wondered that once or twice myself. But then I remember.

My husband was no quitter. He left a comfy corporate job to start his own company the very year that the housing market crashed. He didn't give up. He reworked his business model and thrived in a market when contractors were going belly up left and right.

He started working on his bachelors degree while working 70+ hours a week, with a depressive wife and two small babies at home. He didn't give up, he graduated with honors.

He overcame a few years period of addiction long before I met him, pulled himself up  by his bootstraps and didn't give up.

Whenever he picked up a new passion, he had incredible hyper focus until he mastered it. He learned and failed and sometimes got yelled at by his wife for neglecting family time and while he would sheepishly pull back and re prioritize, he did not give up.

He found poker when he connected with a group of old friends and found something that would be a true passion in his life. He studied game theory, applied it to both his game and business and quickly became a better and better player. He learned the wisdom of when to fold, when to bluff, when to go with gut instinct and when to choose analysis and odds over gut instinct. He was an excellent player and would sing me that terrible song "know when to hold em, know when to fold em..." and I would throw a dish towel at him and laugh.

When he was first diagnosed, he was ready to fight. Had the circumstances been any different,  he would have won a few more years at least. But as the horror of what was happening to his body increased daily, as we got more and more confirmation from the medical community that all pointed to the same end, he chose to fold. He made his decision and it went against his fighting spirit in every way. But, with the grace of someone far past his age and wisdom, he chose to let go.

I was, and still am, fiercely proud of him. I hope I can be half as gracious when my time comes. To me, he is a warrior... no less than those who battle for years, trying everything they can and enduring so much to simply stay alive.

He saw what could be and chose the path that he could live with for what remaining time he had.

So in this season of awareness, of celebrating survivors, of raising money for more education,  more research,  more more more... I raise a glass to the ones who could only choose to let go. To the ones who simply didn't get a chance to fight.
To you, my love.

Werk It

So, there have been some big changes at my workplace.  Corporate came in and cleaned house and none of us lowly grunts really knew what to expect. I miss my Chef Connie but I am proud that she is off to a new adventure.  I hope someday our paths cross and we can work together again.

So, before the semester began they changed the hours of my position,  baker, to a schedule that is impossible for me: 3am -11am. I could have done it, but I wouldn't be able to see my kids because I would have to go bed so early. This summer I've learned a lot about self care and one thing that I learned is that right now I need a lot more sleep than I used to. I used to be able to function on 5 or 6 hours of sleep,  no problem.  Now, I need 8 to 9 hours. Whether it's the medication I'm on, the depression,  the fact that my body is in a constant state of trying to heal itself or whatever... I don't know.  All I know is that I need my rest.

I also need balance.  I need time to be a mom, a lot of time to myself and time to be a student. I'm no longer interested in throwing myself 100 percent into a job that does nothing but take, take , take. I'm tired of constantly being stressed, overworked and grossly underpaid. Of staying late and coming in early and constantly coming to the rescue. I've no more to give. I love what I do and I'm good at it... but it's time for something new.And getting there requires time and energy. I am somewhat of an overachiever and a people pleaser.  No more. I work to live, not live to work.

So, I took the assistant baker position. It's 5am to 11:30 am (although I get a lot of extra hours whenever I want), so it allows me to keep my health insurance. It hurt to step down. It felt like a demotion,  like I was giving up my rightful place. My pride and my ego was bruised. But I felt it was the right decision.

Luckily,  my gut was right this time.  Not only that, but the man they hired to fill the baker position has turned out to be a gift from the universe. I was very nervous about having to work with someone new... I'm a bit of a lone wolf and I like to do things a certain way. I work clean.  I am very organized and don't tolerate mess or chaos very well. I can be a hard person to work with,  it's something I'm working on, being less rigid in the way I do things, but the way I work is what has made me successful. Surprisingly,  he and I have the same outlook & philosophy on baking & pastry. We work great as a team and he has made it very clear from day one that we are equals. I learn from him and he learns from me. We are making great strides in making our production more efficient and working as a team allows us both the opportunity to try new recipes, make more scratch goodies and really take control of our department. I'm actually really happy with the way its going, though our kitchen as a whole is struggling a little to adjust to the new ways of doing things.

But it has been a good thing for me so far. Working as a team is new to me, but it feels good. It takes a lot of the pressure off. I'm home in time to rest up a bit, do a little  house cleaning (sometimes), pick my kids up and be more present... or trying at least.

So far, I'm good.  I'm rolling with the changes. Although I'm still pretty upset about the no facial piercings rule.... switching out nose rings all the time is a drag.

Talking to the Wind

Today, as I was folding laundry in my room, I felt the pinpricks of tears, the sadness start to well up. So, I did something I've decided I am going to do when the need strikes: I went to talk to my husband. 

Some people have grave sites to  visit, we don't.  We have a lovely urn picked out that looks just like a beautiful galaxy... a perfect place for his ashes. But for me, talking to a bottle of ashes feels silly. He's not there for me.

There is a spot on our farm where I can sit and look out at the field, the sky, the hawks and trees and feel the wind. I sat there for a long time on the day he died. It is,  forever whatever reason, where I feel he can hear me. And no one else can hear me. Scream, sometimes.  Cry, mostly. Tell him how much I miss him and love him and beg for help to get through one more day. To tell him how much the week sucked or how we've acquired yet another animal or how much his son is looking more and more like him and how much his daughter misses him, even if she can't say it.
How I hope he's ok, at peace. How much I want him to be free and how much I wish I could feel him, one more time.

It's a little strange, because that hill is a mess of weeds, tall grasses and anthills. But that spot, my spot, remains bare. Waiting when I need it.

Scared

I am just feeling like a big mess. A big, raw puddle of nerves, sadness, pain, longing and despair.  I am not ready to work. I'm not ready to pretend to be ok. I am terrified and I hurt, all the god damn  time. I feel crazy. I feel small. Incapable. Useless. Terrified. 

I visited my brother's church today. I sobbed through all of the songs... they all reminded me of him.

I don't know how to be alive anymore. I hate waking up in the morning.  The only peace I feel is at night, when the darkness matches my mood. 

My kids start school tomorrow. I start work Tuesday. I see my pain management doctor friday. My soul is pleading: Please let me be ok. Please let me handle it. Please let me find a routine again.  Please help me keep my kids safe and happy.

I'm surrounded by love and support and I still feel so alone. So lost. So broken. 

Please. Just, please.

All The Things

Summer is almost over. So far, here is how mine has gone:

80 bazillion trips to the emergency room.

Days upon days of laying in bed, or, if I'm feeling especially sassy, laying on the couch.

Complete and total nervous breakdown.

Cycling through doctors who a.) Don't believe me b.) Don't care to try and help me and c.) Think that I enjoy birthing a stalactite through my pee hole every two weeks.

Battling suicidal thoughts. Like, daily. The internal monolouge telling me that I am a waste of space,  worthless and undeserving of grace is loud and terrifying.

Isolating myself from the people I love, simply because I can't even stand to be in my own skin.

Constantly having to break the few plans I did try to make because the angry weasels that live in my kidneys decided it was time to party.

Gaining weight while simultaneously having absolutely no appetite.

Doing absolutely none of the projects or creative pursuits that I was looking forward to getting done.

Becoming increasingly agoraphobic, to the point that going anywhere by myself is extremely difficult.

Yeah. Things aren't good, but there are good things happening.  I enrolled in and will start college classes in a few weeks.  I'm double majoring in hospitality management and health care administration. I have 28 classes to go until I get a piece of paper that I hope will allow me to be self sufficient and maybe not have to spend 16 hours a day on my feet.

I'm in outpatient psychiatric care with a team of people who are really helping me to face & deal with the emotional trauma I've experienced. It is helping, little by little.

I've found at least one doctor who is compassionate,  caring and seems excited to learn more about the disease I have. Though he is limited in what he can do for me, he has gone to bat for me and pushed through red tape to help me get the care I need.  

My relationships with my family have grown even stronger. My kids are ok. I am honest with them about how much I am struggling & hope I am setting an example for them in self care and growth. I'm leaning heavily on the help I have.

So this is where I am at. I know I am alienating people,  people who only want me to be ok. But I can't - and won't - pretend.  I am not ok. I will be someday and that someday may be in a year or it may be in 10 years.