Monthly Archives: January 2014

An Alabama Doctor Walked Six Miles Through Snow In Order To Perform Life-Saving Brain Surgery

Birmingham is my hometown, and I’ve been following the news around the bad weather there very closely because my sisters and many friends still live there.  My middle sister is a police officer, and she responded to several of the many car accidents on foot because the police cars couldn’t get through.

There are also news stories of people giving rides to strangers and even welcoming strangers into their homes when the roads became impassable.

Stories like this give me faith in humanity.

An Alabama Doctor Walked Six Miles Through Snow In Order To Perform Life-Saving Brain Surgery.

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Gun Control and Mental Illness

So now I’m the caucus coordinator for my town for the campaign I’m working on.  I don’t know why, since I’ve never been involved with a caucus before, but the town campaign coordinator asked me.  I’m always interested in learning new things, so I said yes.  That’s one of the things I love about working on campaigns: there’s always something new to learn, so I never get bored.  So it’ll be fun to learn all the new stuff about caucuses.

Tonight I went to a forum with the five Democratic candidates for governor.  I won’t bore you guys with all the details because most aren’t interesting or relevant to people who aren’t from my state or aren’t huge political nerds.  But there was one issue that came up that’s relevant.

One of the questions was about controlling gun violence.  There were the usual answers: stricter gun control laws, anti-gang programs, cutting back on the import of guns from states with fewer regulations, etc.  Inevitably, one of the candidates mentioned that we need to have laws that require disclosure of mental health records if you want to buy a gun.  I groaned because it ALWAYS comes up when there’s a mass shooting: “OMG TEH CRAZIES ARE GONNA KILL US!!!11!1!”

Then my candidate spoke.  She said that we should conduct appropriate threat assessments for mentally ill people because most mentally ill people aren’t any more likely to be violent than anyone in the general population, and most are not a threat to the public.  I wanted to run up on stage and hug her.

All too often, we’re portrayed as scary, especially those of us who have been hospitalized.  During one of the 2012 presidential debates, Obama said, “We need to keep guns out of the hands of violent criminals and mentally ill people.”  He put me, a person with a serious mental illness, on the same level as a convicted murderer, and I’ve never murdered anyone.  Aside from my martial arts practice and whacking my sisters as kids, I’ve never even hit someone.  When our leaders make statements like his, people with mental illness suffer.  It increases the stigma and makes people afraid of us.

Statistically, you’re more likely to be killed by a shark than a schizophrenic.  The single greatest predictor of gun violence is alcohol use.  Still, every time there’s a mass shooting, every news anchor in America wants to diagnose the shooter with a mental illness.  But committing violence, even something as terrible and huge as a mass murder, does not necessarily mean the perpetrator is mentally ill.  It is entirely possible to be full of hate and rage without being mentally ill.

I was very proud of my candidate tonight.  She’s the first politician who’s made me feel like my mental illness doesn’t make me a bad person.  She’s the first politician who made me feel like she wasn’t scared of me.

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Out of Control

I just had a full-on meltdown, complete with yelling, throwing things, and crying, because I spilled Rice Krispies and Trivial Pursuit cards all over my couch and myself.

Everything just feels so out of control.

I feel like I can’t control any of what’s happening to me right now.  I can’t control the fact that I’m too sick to work, and I can’t control the fact that the government won’t give me enough money to live on.  I can’t control the fact that I’m totally broke and that this happens by the last week of every month.  I can’t control the fact that my case worker for food stamps is dragging her feet.  I can’t control the fact that the food bank doesn’t let you come often enough because they don’t have enough food for everyone who needs it.  I can’t control the fact that DMH is looking for any way possible to refuse to offer me services.  I can’t control the fact that Medicaid won’t give me transportation to my therapist’s office.  I can’t control the fact that my apartment is freezing because our pellet stove refuses to work.  I can’t control that I’m having obsessive suicidal impulses and graphic visuals.

I feel like I can’t control anything.

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Alone

I’m feeling very alone tonight.  Needy.  Childlike.  I don’t like it.

I think it’s all the bureaucratic crap I’m dealing with.  I feel like I’m trying so damn hard to make my life work, but the people who could help don’t care and are only interested in figuring out how to deny me help.  I feel like they want me dead.  I’m not having serious/active suicidal impulses yet, but the thoughts are definitely there: “You could get out.  You don’t have to deal with all of this.  Nobody should have to live like this.  It’s okay to give up.”  And those thoughts feel like compassion for myself.  Like kindness.

I want someone to help me.

No.  What I want is for someone to take care of me.  I want to be a child again, but this time surrounded by people who actually love me instead of people who say they love me but hurt me instead.  I don’t want to be a grown-up anymore.  I don’t want to have to worry how I’m going to afford food or pay my bills.  I don’t want to have to decide between freezing and spending $500 to fill the oil tank or buy pellets for the stove.  I don’t want to have to fight to get mental health services I clearly need.  I don’t want to have to worry which medications my insurance is going to deny this month.

I want to be a kid.  I want all those things to never even enter my mind.  I want to not have to worry about anything.  I want someone to hug me and scratch my back and play with my hair.  I want someone to cook my meals and fold my laundry and wash my dishes.  I want to have friends and never even think that they all secretly hate me.  I want to believe that the world is beautiful and I’m full of infinite possibilities.  I want to be held and cherished and loved.

But I’m just alone.

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I Hate My Guts

My psychiatrist finally got back the organic acid test results from over a month ago–it’s one of those where you mail in the samples, and the lab took forever getting back to us.  Apparently my results were weird, not what he expected.  He thought there would be something wonky about my mitochondria, but that came back fine.  However, my fatty acid metabolism was high, and I have intestinal bacterial overgrowth of both L. acidophilus and Clostridial species.  Apparently the bacterial overgrowth may indicate that the probiotics I’m taking aren’t the best kind for me, and he had no idea what the fatty acid oxidation issue meant.  He has to check with one of the lab’s doctors and get back to me. 

My detoxification indicators were also really wacky–ammonia toxicity and chronic low glutathione levels.  Glutathione is one of the major detoxification things (I’m good at technical terms, see?) in the body, so being low in it isn’t good.  I looked it up on Wikipedia, since the last time I took biology was 2002, and it tells me that “every system in the body can be affected by the state of the glutathione system, especially the immune system, the nervous system, the gastrointestinal system and the lungs.”  Interesting that these are the systems I’ve been having the most problems with.

In the good news column, my yeast/fungal levels are normal, which is a radical change.  The last time I was tested, I was off-the-chart high in Candida, but the course of Nystatin and S. Boulardii seems to have knocked that down to normal.  Hilariously, my energy production markers had “no abnormalities found.”  Tell that to my inability to stand up for more than 20 minutes at a time.

I also saw my gastroenterologist.  I am pleased to announce that I don’t have to have another colonoscopy (yet). He thinks the Lialda may actually be what’s causing my current problems–its side effects can look just like the symptoms of UC.  So he’s taking me off it for a week, and next week I’ll call and let him know if it’s made any difference.  I’m not convinced–I’ve been on the Lialda since I was diagnosed in May of last year and haven’t changed the dose in 6 months (I’m maxed out), and I’ve only been having worse symptoms since December.  Usually a drug doesn’t start causing problems all of a sudden like that when you haven’t changed the dose or anything, but I’ll try and see if it does any good.

He’s also going to fight with the insurance company to try to get me a larger supply of Zofran for the nausea.  I hope that works out because uggghhhhh.  I feel nauseous almost all the time, but I put off taking the Zofran because I want to have some left if things get really bad.  Apparently my insurance company keeps insisting that I should take Phenergan instead, but that can cause toxic megacolon in UC patients.  “Mega” is a word you want associated with your lottery win, not with your colon.  But I guess my insurance likes it–after all, if my colon explodes and kills me, then they don’t have to pay for my meds anymore.  Thanks, guys.

Now that I’ve told you all the fun news about my intestines, I’m going to go distract myself by watching the State of the Union, livetweeting/Facebooking, and then yelling at the Republican responses afterward.

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I Hate Everything

Fair warning: this whole post is just me ranting and whining like a spoiled entitled bitch.  Feel free to ignore it.

I want to kill people right now.

DMH–the people who said, “We already have 200 clients.  Which of those do you want us to drop so we can serve her?”–sent me a registered letter today.  Like 15 minutes ago.  Saying that if I don’t call them by tomorrow, they’ll deny my application for services.  And the woman I’m supposed to talk to isn’t answering, and her voicemail is full.  And I have five million things to do tomorrow.  Seriously.  I see my psychiatrist and then my gastroenterologist and then my therapist.  I have to switch my voter registration to my new address before the deadline, have a phone interview for food stamps, and go to the food bank if I want to have anything to eat, not that they have much food I can eat to give me.

It’s probably a good thing this woman’s voicemail is full because my message would say something to the effect of, “Look, bitch, you’ve talked to my team leader multiple times, and you know I’m in need of services.  I’ve legally authorized her to speak to you on my behalf, and I know she told you to go through her for stuff.  I don’t fucking know you, and I have an irrational fear of talking to people I don’t know on the phone–something that, you know, is part of my MOTHERFUCKING MENTAL ILLNESS.  Which is why I need services.  But you assholes have clearly demonstrated that you’re more interested in finding excuses to deny me services instead of help me, so go fuck a cactus, bitch.  Preferably one of the poisonous ones.”

I also got a letter from Medicaid denying me transportation to my appointments with my therapist because “provider/facility is outside locality.”  NO FUCKING SHIT.  That’s why I need GODDAMN TRANSPORTATION.  To get to her, I’d have to walk two miles–either along a busy road with no shoulder or along railroad tracks, either one of which could endanger my life.  Then I have to take 3 buses, with layovers where I have to wait outside–and we’ve been having windchills of -15.  Then I have to walk half a mile uphill on a road which is, due to the aforementioned frigid temperatures, icy and dangerous.  And did I mention that I have a bone spur and arthritis in my lumbar spine and sacroiliac joint, which causes significant pain when I’m on my feet for longer than 30 minutes a day?  Or that my severe autoimmune disorder often leaves me so weak that standing for long periods of time is impossible?

It’s too bad none of this happened yesterday, before I went to the forum where I met the current state attorney general who will probably, according to polling data, be our next governor.  She particularly mentioned, more than once, that she wants to increase access to mental health care and decrease the stigma, and I could’ve asked her what she’s doing about bullshit like this.

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Yay Politics!

This evening, I went to a meet-and-greet with one of our gubernatorial candidates.  (I swear, this post is more than just an excuse to say “gubernatorial,” but you have to admit, it’s a fun word.)  It’s a candidate I really like, and it looks like I might do some work on her campaign.

They’re trying to recruit me as a delegate for the state nominating convention, and I said I might do it.  It’s a thing I would be able to do despite the UC, which is cool, and the event was described to me as a Star Trek convention for political nerds.  I like sci-fi cons (to which I’ve gone in costume, more than once), and I’m definitely a political nerd, so it sounds right up my alley.

I’ve got to talk to the local field organizer about exactly what’s involved.  I know I have to go to my town’s caucus and get elected as a delegate, but I don’t know what’s required beyond that.  I know my town elects delegates by ward and possibly even by sub-ward, and I’m guessing it’s fairly competitive in my area because there are a lot of politically involved people.  I’m not sure what my chances of getting elected would be, but I figure what the hell.  It’s not like I’ve really got anything to lose by trying, and if I don’t get elected, I can still go to the convention as a volunteer.

I’m pretty excited that there’s something major that I can do in spite of my new physical limitations.  Over the last few years, I’ve found that political work really increases my self-esteem.  I feel smart and capable and valuable, and I feel like I’m doing something that matters.  It’s a hell of a lot better than sitting on my couch.

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Invisible-er

I need to rant/whine a little bit.  And I just need to be heard, I think.

I’m feeling frustrated at the invisibility of ulcerative colitis.  It’s an invisible illness, yes, but I feel like it’s invisible-er than other invisible diseases–particularly Crohn’s.  (For those of you who aren’t familiar with it, Crohn’s disease and ulcerative colitis are the two main types of inflammatory bowel disease.)

People have heard of Crohn’s.  There are Crohn’s awareness posters and t-shirts and bracelets.  A lot of people know someone with Crohn’s.  They even have a name for themselves: Crohnies. 

But most people don’t know about ulcerative colitis.  I think I’d maybe vaguely heard of it before I was diagnosed, probably from a drug commercial on TV that I wasn’t really watching.  We don’t have a cool name–I mean, what are we going to call ourselves, Ulcerites?  We’re mentioned on joint IBD awareness stuff, but I’ve never seen any awareness anything just for people with UC.  When UC is recognized, it’s often minimized in comparison to Crohn’s because less of our digestive systems are affected.

The heart of the matter, I guess, is that I don’t want to be invisible.  I want my struggles and pain to be seen and validated, not compared and minimized.  I want people to know that what I’m living with is real and painful and difficult.  It’s isolating enough on its own without being swept to the side.

I want to be seen.

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Sister/Sister

My sister is getting married in August, and she’s been texting me pictures of wedding dresses all day.  She looks happy, healthy, wonderful.  I can’t help but envy her a little.

It’s a weird thing, almost a role reversal.  See, she’s two years younger than me, and I spent most of my life taking care of her and our youngest sister.  Our parents were not exactly what you’d call good parents, or anything vaguely resembling it.  I tried, with only limited success, to shield her (both my sisters) from our father’s sexual abuse and our mother’s emotional abuse.  A therapist once asked me if I was proud that I’d basically raised my sisters, and I realized I was.  Both of them turned out happier and more stable than me, which I consider a big success, given our circumstances. 

My middle sister, the one who’s getting married, is the most stable and successful of the three of us.  She finished college in four years, got a BS in criminal justice, and is now working as a police officer.  She’s been with her fiance for around three years now, and they’ve even successfully raised a very cute pair of puppies together.  I’m proud of her, and I’m so glad she’s happy.

I guess it just makes me feel like a failure.  I’m the oldest, so I should’ve gotten my life together first.  I shielded her from some of the abuse, but she still got a lot of it.  Our histories aren’t that different, but she’s dealt with hers a lot better than I have.  What do I have to show for my life?  No college degree, no job, a complicated-to-the-point-of-inexplicable relationship with B, very few friends.  My closest relationship is with my toilet, for god’s sake.

I know I shouldn’t judge myself against anyone else, but let’s be honest–everyone does it.  It’s even harder not to judge myself against her since we share the same gene pool and the same home environment.  It’s especially hard because our roles in the family have shifted somewhat.  I used to be the overachiever who never got into trouble, and she got drunk and did drugs and slept with a lot of guys.  (She was always our mother’s favorite, though, and all her mistakes were overlooked.)  But now she’s successful, and I’m not.  The contrast makes it harder.

I’d never want to take away her happiness or success; she absolutely deserves it.  I love my sisters more than anyone else in the universe, and I’d do anything for them.  But I want to be successful and happy too.

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All the Wrong Words

I’m feeling frustrated by words.  Lately I can’t seem to find the right ones.  I think I’m being clear, but then people misunderstand or get hurt or angry.  I used to be good with words.  I used to be a writer–I did an MFA-level program in creative writing–but now I don’t write.  Now I can’t even make myself understood.

It feels unbearable, as melodramatic as it sounds.

I finally found my voice when I got away from my family, but I don’t have the words I need anymore.  What’s the point of a voice if the words are lifeless?

God, I sound angsty and melodramatic.  (A judgment that results, at least in part, from all that education in creative writing.)

So I’m borrowing someone else’s words.  I do that a lot these days.  These are a few poems from David Budbill’s collection Moment to Moment, which I think everyone everywhere should read.

 

Trying to Be Who I Already Am

 

People tell me I am arrogant and pigheaded,

narrow-minded and vain

because I won’t follow this week’s guru into his

seventeen steps for improving my life.

 

Well, I’m over here in a different place—

with T’ao Ch’ien who says,

My nature comes of itself. It isn’t something

you can force into line.

 

So, please, leave me alone.

I don’t want your advice.

I’m just trying to be

who I already am.

 

*

 

My Fate Is to Rebel

 

If you say yes,

I’ll say no.

 

If poetry is this,

I’ll write not-this.

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