Surfacing After Silence

Life. After.

One Day I Will Love My Body

ae2db3e26f6acb3b54fd48520d5521f4Here’s another post where I respond to someone else’s work.  Allison Epstein recently wrote “Why I Have No Intention of Loving My Body” for an online publication.  The title itself intrigued me.  As someone in recovery from anorexia, I have had the words “Love Your Body” shoved down my throat for over a decade.  I haven’t always reacted well.

I do agree with Epstein’s argument that the “Love Your Body” campaign has turned into just one more way for certain industries–fashion and publishing come to mind–to make money.  Not just among people struggling with eating disorders, but for anyone in a society that is programmed (due to fashion and publishing industries) to see only a certain kind of body as worthy or beautiful.

Speaking as someone who has recovered from an eating disorder and struggled with intense shame surrounding my body, I don’t want to proclaim that I have no intention at all of ever loving my body.  Loving my body is an ideal that I work towards, and I even have days when it’s true.  But to be honest, I haven’t yet reached a transcendent point in recovery where I can say without any hesitation that I love my body with all my heart and soul and always will.

But those of us who have sought treatment for an eating disorder or body dysmorphic disorder, we are told that we must love our bodies in order to recover.  At the beginning of my recovery, I was so far away from loving myself that the whole concept seemed impossible.  Which must mean recovery is impossible.  Or so I was made to feel.  In painting across my body’s outline on a piece of paper, I could not draw butterflies and suns and rainbows or symbols of peace and strength.  I could draw angry red scribbles as I tried to destroy my image.  I was fully weight restored, eating intuitively, and not over-exercising.  All awesome things to have accomplished.  But every time someone tried to simple tell me to love my body, I felt as if those things didn’t matter for much since I still kinda hated my body.  And I really did try to “just love my body,” but I think most of you know it doesn’t work that way.

Here’s how things worked for me.  During my first year of recovery, I focused on intuitive eating and I learned how to listen to my body and respond appropriately.  Because of the severity of the over-exercise, I agreed to one year exercise free–no running, no yoga, no speed walking, no biking, no weights.  Nothing.  The idea was to “reset” my relationship with exercise.  I still really couldn’t have cared less for my body.

So during the second year of recovery, I had a pretty good handle on intuitive eating and no longer consulted a nutritionist and didn’t see my doctor every week “just to make sure.”  I gradually reintroduced exercise into my life style.  i did not let myself keep a schedule, because in the past, that only led to obsessive thoughts.  Instead, I woke up and thought, “What would I like to do today?  Run or do yoga?”  It was through yoga that I released a great amount of hatred toward my body.  On the mat, I realized that even though I didn’t have the same super-athletic body I had while I was an All American in Track and Field, my body could do some awesome things.  I’m not extremely flexible, but I realized I was doing poses a lot of people couldn’t, and I could hold poses for a significant amount of time.  My time on the mat gave me the opportunity to appreciate the body for everything it could do for me, just as it is in that moment.  I didn’t need to improve upon it or make it stronger.

But did you note the language I just used?  I used “it” instead of “my.”  I still saw myself as separate from my body.  My body was this appendage that was necessary for me to exist, so I had to put up with it.  Not only did I continue practicing yoga, I began practicing slower, gentler forms of yoga than I was accustomed to.  While I was in a pose, I listened to what my body was telling me, something I’d later call mindfulness.  My body could tell me where I was sore or if I was tired and needed rest.  My body could also tell me if I was stressed emotionally, or angry, or overwhelmed with sadness.  This was when I began to learn to accept my body, and I learned to say that it was indeed my body.

Then I began learning more about mindfulness, which, to be honest, terrified me in the beginning.  Body scans could cause nightmares.  Very slowly, however, I learned to sit in my body, to be still in my body, and to be present in my body.  I am still beginning my journey of mindfulness, but over the previous few years, I have moved from a tolerance of my body to an appreciation of my body.

I admit, I do not wake up in the morning filled with love and awe for my body.  But neither do I wake up hating my body and dreading the sight of it.  There are days when I can appreciate my body just as it is, but there are more days when I still appreciate my body for what it can do for me.  This does not take away from my recovery.  If anything, the fact that I can acknowledge the different stages of body awareness is a huge accomplishment.

This body is mine.  I treat it well and take care of it.  I listen to its needs and wants and respond appropriately.  I could not do any of this while I was sick.  I think that if we expect people to jump from intense self-hatred to all-encompassing love of the body, we put too much pressure on them.  Recovery is not a one-day process, and we should not expect sufferers to “just get over it” as soon as they maintain weight or maintain healthy behaviors.  Our bodies carried heavy loads for such a long time, and we need to give them the grace and patience to heal.

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August 31, 2015 Posted by | addictions, Body Image, Eating Disorders, health, mindfulness, progress, recovery | , , , , , , , , , , , , , , , , , , | Leave a comment

I Wish My Doctors Had Listened

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I love facebook quizzes.  I have learned what my name should have been, what state I belong in, what state I am from, my element, my spirit type, and a whole lot of other things I have to believe because it’s on facebook, so it has to be true.  Yesterday, I learned that people call me a “sage” behind my back.  I think that is the polite way of saying that people call me a nerd.  This is not real news to me; I have always been a nerd, and I now claim that label with pride.

Nerds like to think.  I like to over-think.  (Does that make me a Super Nerd?)  Since July, I have been complaining about a cluster of physical symptoms, and every symptom is familiar to me.  “I feel this way when my ferritin levels start to drop,” I repeatedly told my doctors.  The only one not to suggest that it was “just stress” or “just depression” was my psychiatrist, who firmly believed there was something physical going on.  After all, over the past several months, my depression has lifted tremendously, my anxiety has decreased, and we’ve been able to stretch out my ECT treatments and go off of two of my psychiatric medications.  I said, “It doesn’t make sense that these symptoms are caused by depression if my depression is steadily improving.”  My medical doctors told me it was fine and that my ferritin levels were within normal range.

Technically, they were.  But when I dug up my labwork from the previous six years, I discovered that my current ferritin level was 2/3 below my usual norm.  One year ago, my numbers were usually around 80 (low for the average person, but normal for me since I was born iron deficient anemic).  Now they had dropped down to 16.  Off to the hematologist I went, and he was shocked my doctors had not treated this earlier, especially given my history.  “Dr. X actually told you it was probably just stress?” the hematologist asked.

I know my body.  Because of recovery.  I have learned to listen to my body and to respond appropriately.  When I practice yoga, it is no longer with the intention of “getting stronger.”  It is with the intention of listening to what my body has to tell me that day.  So sometimes I hold poses longer, sometimes I push deeper, and sometimes I skip poses completely.  Through my cardiac journey, I can “read” my heart accurately and can often tell you my pulse rate and my blood pressure without using measuring tools.

I can tell you when something is wrong with my body.  My doctors in MO knew to trust me in relaying symptoms.  My current doctors (aside from my psychiatrist) have not learned to trust me yet.  Instead, they (I sought out three separate family physicians because I never felt heard) repeatedly relied on depression and anxiety, even though I told them multiple times that “this is not what depression feels like.”

In seeing my psychiatric diagnosis on my chart, did they assume I was there for attention?  That I was merely pill-seeking?  That I couldn’t be trusted to know my own body?  I may have Bipolar Disorder and a history of Anorexia, but that doesn’t mean my doctors should disregard what I say.

Have you experienced something similar?  Could you please take my survey?  I am not a scientific statistician, and this is not an “academic level survey” that could be used in a peer-reviewed study.  You don’t have to supply your email, and you don’t have to answer every question.  If you would like to contact me, please message me with your email or send me an email at KatchukMFA@gmail.com.

May 3, 2015 Posted by | bipolar disorder, Communication, depression, Eating Disorders, ECT, recovery | , , , , , , , , , , , , , , , , , , , | Leave a comment

2014

Brandi Carlile

Brandi Carlile

Brandi Carlile is my 2nd Favorite Singer of All Time.  I love her.  I have fallen in love with her.  (In a non-creepy, non-stalkerish manner!)  And today I had the chance to listen to her music all the way from Albany to home.  Her lyrics often get me thinking of certain people and situations, and being the last day of the year and all, I was in a reflective mood to begin with.

The previous 365 days can be split into Before and After.  Before accounts for January through the end of May.  After is anything after June 1.

“Turn to light or fade to black; you don’t look back no you don’t look back; at what you might not want to see.” ~”Save Part of Yourself”

I could ignore the Before; it’s not filled with pleasant memories, so it would be nice to ignore those months.  But I hesitate to do that.  Whether or not I like what I see, those five months did happen, and I am still here, and I feel like I have learned a lot because of that.

I began 2014 in the hospital.  I start the semester teaching and tutoring.  Ugly Depression Number Infinity requires that I stop teaching due to the fact that I can’t find the motivation to go to the kitchen and cook (thank you pre-made food companies) let alone go to the school to teach. Ugly Depression only grows so that I experience what is the worst of all my depressive episodes.  One night late in April I do a lot of research and planning and wake up in the morning to find I had scheduled out every single detail of my suicide attempt and written it into my calendar.  That scared me–I KNOW that suicide is NOT an option.  But the depression was twisting my mind.  So I spent all of May in the hospital, which may seem like a bad thing, but I discovered that giving up all control and being 100% honest and allowing my doctors to help me without questioning or fighting them really is a good thing.

May 31 I am discharged.  June 1-3, we pack up all my belongings, hop in a UHaul truck and begin driving from Missouri to New York, thus beginning the After part of my year.

Moving back in with my parents took some adjustment on all of our parts.  And the cats had to adjust as well.  I connected with friends from my high school years when the anxiety let me.  I only had a psychiatrist–no therapist, no general physician, no cardiac team–meaning I would have to rebuild my support system from square one.  And as the depression and anxiety continued to improve, I did just that.

Moving back east has forced some reflection time.  When I last lived here, I was the Perfect Outstanding Athlete and Scholar Who Was Supposed To Go Far and Go Big.  I’ve had to come to terms that I am not the same person that I was in 1995–and that I didn’t have go back to being that person.  I have been fairly open and honest with all these people that remember me from back then, and I have been supported and encouraged in amazing ways.

I also thought that when I moved back east, I’d just pick up where I left off concerning old friendships.

“It wasn’t too long before/ I showed up at your door/ I’d been gone a thousand miles
I didn’t know how much more I could stand/ If I could stand at all
You said I looked like I’d been through World War II/ And my soul was worn right through
I thought you would read my mind/ I thought you’d ask me to stay
You’d never turn me away like before/ But you closed your door anyway” ~”What Did I Ever Come Here For?”

While some of my old friendships have survived, a large number of them did not.  I went through anger and bitterness and sadness and guilt.  I kept asking myself “What could I have done differently to make this friendship blossom? What did I do wrong?”  It has taken me several months to realize that “what I did wrong” was part of who I was back in my twenties, and that most of my old friends do not know who I am now.  Let’s face it: my twenties were ugly years, and I can’t blame anyone for not welcoming me with open arms and shouts of joy.  I don’t think things I have done are evil and unforgivable, and maybe people have forgiven me, even if they do not want me in their lives now.  I’m a big risk to take, and people now have families to take care of and jobs and committees and life.  I’m not sure I would take a risk with me at this point.  Their current lives.  My past.

And the end of the year always makes me remember a couple significant people from my past who are no longer with us:

“I wish I could lay down beside you When the day is done
And wake up to your face against the morning sun
But like everything I’ve ever known You’ll disappear one day
So I’ll spend my whole life hiding my heart away” ~”Hiding My Heart”

But I’m learning that maybe hiding my heart away is not my best option and that I need to be open to new experiences and new relationships.  Even if people disappear.  Even if there’s pain.

Who’s gonna break my fall When the spinning starts
The colors bleed together and fade?
Was it ever there at all? Or have I lost my way?
The path of least resistance Is catching up with me again today” ~”Again Today”

The other night a friend from my twenties were talking.  This is someone who went through her own version of hell and is learning to thrive.  I wanted to know if she ever missed all that stuff from back then.  Because although I don’t miss my behaviors from back then, I do miss the ability to escape from reality–to run away.  It is comforting to know I’m not the only one that wants to just run away sometimes.  But it’s also a comfort to know someone else is choosing not to run away.  It would be easier.  But life is worth every slammed door in my face, every question of faith in my head, every time the depression feels overwhelming, every time my heart skips a beat and fills me with fear.

Screw the whole “If you changed your past, you wouldn’t be the same person you are today” belief.  I’d change a whole lot if I could.  But I no longer live as if I can.

So while I hope this year is better for me and for others who are struggling, I want you to look at the person you have become now and live for today.

January 1, 2015 Posted by | Uncategorized | , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Dude, You’ve Got to Stop Taking Crazy People Meds

I read an article about how effective Bipolar medications are, and that less that half of these patients take their meds.  The question being: How to get more patients to take their medication.

I have some ideas, although I bet a lot of them won’t be supported.

1.  Use treatment facilities.  Not for a mandatory 72-96 hour hold.  Whatever treatment that is pursued in that time would not have a chance in hell of actually taking effect.  Unless we count the sedatives they are happy to dole out to get the patient to a ‘better place.’  That ‘better place’ is usually a bit calmer than upon arrival and the number of suicidal ideations has dropped significantly.  But they haven’t gone away completely.  Nor have the self-harm urges or the disturbing thoughts or compulsions–they’ve been numbed away temporarily.  I have had many weekend stays on psychiatric units.  Yes, they kept me safe from harm.  But then I got out, and most often went right back into the not-so-great behaviors that landed me inpatient in the first place.

The times I have been hospitalized that have been most effective for me are the times that I stayed awhile.  As in a month.  Or more.  No one wants to be kept on one hallway for a month, but during that time, I was first able to grieve/mourn/cry/flip out about why I was there.  Then the doctors began adjusting medication.  Psychiatric medications do not work like antibiotics: they take over a month to take effect.  So a 72 hour hold only gives the doctors a chance to see if you have serious side effects, and then you are given over to your outpatient treatment team.

You’re a lucky person if you can see your outpatient psychiatrist soon after discharge.  They’re overworked and have cramped schedules.  So what motivation is there to take a medication if you can’t tell if it’s doing anything?  While inpatient, I was able to take medications and then go to therapy groups to help me with coping skills while the medication began it’s work.  At the end of my stay, I was able to see the medication working, giving me much more motivation to continue taking them at home.

And a lot of times it comes to insurance companies kicking patients out before either the doctor or patient feel that they are ready.  There are the employers who don’t believe depression is a good enough reason to make us of time off procedures.  There is pressure from peers that “dude, how long you gonna stay in the looney bin?”

2. Insurance companies are not my favorite corporations.  I’m on medicare, and medicare doesn’t pay for a lot of things.  We found one medication that actually did help significantly in a short period of time.  Medicare would not fill the prescription, and the cost was over $550 dollars a month.  We challenged medicare, and they compromised by saying they would pay $50 dollars per month.  If I’m on medicare in the first place because of being on disability, where am I supposed to get that $500 dollars every month?

3.  Communication, on both the part of the doctor and the patient.  My first psychiatrists just handed me pills, with no real explanation attached.  I was young; I trusted doctors; I took the medications.  Now? I make my doctor explain what each medication does and why it is supposed to help and how it will help and how it is different from the other medications we’ve tried.  I ask about positive effects and side effects.  I ask how it will affect my daily lifestyle.  I ask how long before it will take effect.  It’s like 20 Questions, except the answers require more than a yes or no answer.  Doctors are busy busy people.  But if you speak up and ask them questions, they will answer them.  If they don’t answer them, then you can ask to speak to another doctor.  As a 37-year-old, I have a say in every single decision that affects my care.

I found myself writing more, but I will wrap it up since I will get off point very quickly.  Mental illness is treated differently from physical illness.  None of my friends have ever asked me, “you’re done with that cardiac medication, right?  you don’t want to stay on that too long.”  But I have been asked, “Why do you take these psych meds?  You’ve already been on them for two months–get rid of them!”  Mental illnesses are often life-long struggles, much like diabetes.  But people still blame the mental patient for their illnesses.  “You aren’t praying enough.”  “Have you read the Bible lately for guidance?”  (Actually, I have prayed and read my Bible.  For guidance on coping with an illness.  Much like I converse with God about how to endure with a terminal heart condition.)  “Have you tried yoga?”  “Have you tried taking more Vitamin D?”  (Yes, I’ve tried yoga; I was a yoga instructor.  It helps, but it is not a cure.  And I consult with each of my doctors before adding in anything other than prescribed meds.  Vitamins are good–but some of them are rather dangerous as well.)

So my Fourth and Final suggestion is to decrease mental health stigma and to support those who struggle with mental illness and encourage them with their treatments.  Stop blaming them, shaming them, making them feel guilty for needing medication.  This medication does not interfere with my faith.  If anything, it strengthens my faith because now I’m able to develop my relationship with God, whereas before I could barely understand the term “faith.”

December 10, 2014 Posted by | Uncategorized | , , , , , , , , , , , , , , , , | 2 Comments

Not My Year

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I’ve used this image before.  But it keeps kicking me in the gut, so here it is again.

I’m in a particularly scary stretch of not knowing.  I have been here before.  While living in DC, hospitals and cardiologists kept telling me nothing was wrong with my heart–aside from the fact that I was anorexic and “we can’t help you there.”  I move to Missouri, still complaining about my heart.  The cardiology team wrote me off.  My physician happened to be an eating disorder specialist, so when I fainted while running–after a solid year of symptom free behavior and health–he knew something was wrong and sent me to St. Louis.  I finally met a cardiologist who listened to me and believed me.  And then he diagnosed me.  And then I had my ICD put it.  And then I went through a fairly long period of doubt and questions regarding my faith.

Now?  I have spent the summer going to doctors in the area, and they kept telling me that all my labs were fine and I was normal.  I kept advocating for myself, because this is not normal, and my GP referred me to an ENT.  I only had to travel one hour and five minutes to get to his office–and found a doctor who listened to me and believed me and hardly glanced at my psychiatric history and believed I was in a great deal of pain.  Why the doctors here couldn’t see that, I have no idea.

I don’t have answers yet.  The doctor sat me down and discussed a few likely possibilities with me, all of which kind of scare me a great deal.  He ordered some special blood tests and is waiting to see my CT scan pictures before he decides our next move.  No matter what, I am probably on my way to a neurologist and possibly a rheumatologist.  I could be looking at surgery.

I’ve really been working on radical acceptance–I cannot do anything at all right now that would have any effect on the outcome.  So I am trying to stay focused on the present moment, not all of the what if? questions.  I try to put a positive face forward.  But the truth is:  I am very scared.  I can feel my faith; it’s still there.  But how do you maintain hope in this situation?  How do you maintain trust in this situation?  And the fact that this physical conundrum is happening right in the middle of a “What am I supposed to do with my life?” crisis does not help.

This may not seem to relate to my normal blog entries, but I promise there’s a link.

Yesterday, I had planned on cleaning my room, clearing out a space for my yoga mat, and doing some research for an essay.  And then I got a certain piece of mail and my positive attitude and perseverance and determination all crumbled away.  I curled up on my bed with my cats and cried and then fell asleep for a good while.  Not because I was tired physically, but because I was tired of dealing with “all this shit.”

I see this as progress.  There were no plans to self-injure, no plans to skip lunch, no plans to throw things at my walls.  I really wanted to stay curled up on my bed and never come out, but I had initiated a new Knitting Circle in my town, and last night was our first meeting.  It would have looked bad if I wasn’t there.  So I went, and had an awesome time and smiled and laughed–not because I “had” to but because I wanted to.

Some might say that curling up is maladaptive.  But honestly, I had been trying to stay busy all week and had been trying to solve certain problems and I know a lot of “normal” people who have days where they just throw up their hands and take a nap.  It did not spiral into a deeper depression and there were no dangerous coping skills involved.  And I realized that ten years ago, the outcome would have been a different one.  Hell, two years ago, the outcome would have been different.

One of the most important things (according to me) in recovery is acknowledging the progress and giving yourself credit for the hard work behind that progress.  Small progress, big progress, any type of progress . . . we need to step back and say, “I just did a good thing.”  We focus so much on our symptoms and behaviors and situations that helped lead to the eating disorder and, of course, we beat ourselves up for any sign of regression.

I challenge you all to get out a real piece of paper and tuck it away someplace you will always see it.  For me that’s my journal.  On that piece of paper write out your progress.  Every day write down one thing that you are proud of.  If it’s drinking all of a supplement instead of only have, write it down.  If it’s forcing yourself to go to a knitting group, write it down.  If you are deeply mired in a horrible depression and have been thinking about suicide, write down “I am still alive.”  Be proud of these things.  These are the small steps necessary for recovery.

I was listening to The Weepies “Not Your Year” today, and of course I can relate to that song right now.  But my favorite lyrics from that song are:

“Breathe through it, write a list of desires,

Make a toast, make a wish, slash some tires,

paint a heart, repeating, beating “don’t give up, don’t give up.”

Remember your desires and throw ice at the shower wall.  And if anyone can paint a beating heart with the words “don’t give up” for me, you’re my hero!

November 21, 2014 Posted by | Uncategorized | , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Sprouting

strength

Today I had to drive two hours to St Louis for a routine cardiology appointment that took a grand total of 25 minutes.  Then I got back in  my car and drove two hours home.

Lately, however, on Formspring, I’ve noticed a trend that I used to succumb to as well:  the trend of downplaying physical illness or symptoms with the intention of avoiding any possible medical professional.

I understand that some people are raised this way, but my mom took me and my brother to the doctor whenever we needed it, and quite possibly whenever she needed it.  And my doctor was a really nice guy, so I never learned any “I hate the medical profession” attitudes.

And then what happened?  I went to college and the anorexia went from being a minor sideline issue to a life threatening condition.  A constant presence that couldn’t be ignored, no matter how much I tried.  Around the same time, I noticed that “things felt funny” in my chest.  My heart “didn’t feel right.”  I got dizzy; I fainted; I felt like my heart was beating ‘harder’ than it should. And then, one night when I felt particularly bad, I went to the emergency room.  That was when I had my Sudden Cardiac Arrest (SCA) and flatlined. Now I realize how lucky I am to have been in an ER, next to a crash cart, when I had my SCA.

The doctor told me that if I wasn’t anorexic, my heart would have been fine and I wouldn’t have had a SCA and I wouldn’t feel my heart beating funny.  He looked at my medical records with anorexia written throughout them, and sent me home without doing a single test on my heart.  So I took all of my worries and all of my concerns and all of my doubts and questions and shoved them as deep inside of myself as I could.  I blamed myself and felt extra guilty, and because I didn’t know at the time that I had the strength to recover from the eating disorder, I felt even worse because I thought I was condemning myself to a life of a weak heart that might very well give up on me.

I kept feeling “funny things” in my heart cavity.  But I didn’t go to a doctor because I blamed myself.  But when I entered recovery, I encountered a problem–I was at a healthy weight with no harmful behaviors and my heart was still doing all the “funny things” it had done while I was anorexic.  now the problem was finding someone to listen to me and take me seriously.  My regular doctor dismissed my cardiac fears, and I wasn’t yet aware that I had the right to see another doctor in the same medical practice.

Within one month of moving to the middle of Missouri, I had a new doctor–one who listened to my fears and did a couple minor tests.  And then sent me to a cardiologist in St Louis.  Who then booked me for surgery for an Implantable Cardioverter Defibrillator (ICD).  All of those “funny things” that were part of my head?  They were all symptoms of a very serious illness: Arrhythmogenic Right Ventricular Dysplasia.  This is a genetic form of progressive, irreversible, untreatable cardiomyopathy.  In layman’s terms:  my heart is dying.  The muscle cells of my right ventricle are dying and are being replaced by fat cells, which changes the shape and size of my ventricle, changing how my heart beats.  There are things I can do to help keep my heartrate steady and slow, but nothing can change the progressive muscle death.

Why am I bringing this up?  Because I’ve seen a few people on Facebook or Formspring mention how they know something is wrong, but their doctors won’t listen because of the eating disorder.  It is true that an eating disorder can cause medical problems.  But an eating disorder is not a concrete wall that prevents any and everything else from making the body unhealthy.  You can still get headaches, digestive problems, cancer, heart attacks, kidney problems, and the cold and flu.  You know your own body.  Trust that body.  If you know, deep down, that something is not right, talk to someone.  If your doctor is an asshole and doesn’t listen, find a new doctor.  I would probably not be alive today if I hadn’t found a new doctor after moving to Missouri.

So the four hour drive today was worth it.  I know how Lily (my ICD) is doing.  I talked to the doctor about certain medications.  I asked about recent research findings.  My heart is still beating.  Some days stronger than others.  I look down and see the scar from the ICD surgery and I feel a sense of peace, knowing I have an ICD inside of me in case I have another SCA.  I also feel a sense of pride when I see that scar, because I know that I didn’t give up.  It would have been easier to give up, but I have reasons to fight and I will not let those reasons go.

February 6, 2012 Posted by | bipolar disorder, Body Image, Communication, depression, Eating Disorders, health, heart, mindfulness, recovery | , , , , , , , , , , | 2 Comments

Annual Heart Walk

I normally don’t use this blog this way.  But this is a cause that is near and dear to my, well, my heart.  I was diagnosed with Arrhythmogenic Right Ventricular Dysplasia two years ago–a heart disease that has caused a sudden cardiac arrest, multiple episodes of V-Tach and I’ve lost count of the hospital and ER trips.  I now have a implantable defibrillator.  But there is no cure, no treatment.  It’s a progressive and degenerative heart condition, which basically means, the muscle cells in my heart are slowly dying.  I do this walk every year to help raise money for the American Heart Association, which helps fund research.  Maybe someday they’ll find a cure or at least a treatment for my illness.

My fund raising page

Please consider donating.  The minimum online donation is 25, but if you don’t have a credit/debit card or if you want to donate 5 dollars, message me through my Facebook Page and I will send you my snail mail address.  ANY amount is appreciated.  I only have one month left to reach my goal of $500.  I did it last year, so I know I can do it again.

July 12, 2011 Posted by | health, heart | , , , , , , , | 2 Comments

anger anger anger

A recent question on Hillary’s Hope page on Facebook got me thinking.  Anger.  Such a loaded topic.  Such an important topic for those of us struggling with any type of eating disorder issues or self-harm issues.  What the hell are we supposed to safely do with our anger?  Am I right in assuming a lot of us were never taught this?  That stuffing our anger and not expressing it was the “accepted” way of handling anger?  And that this only led us to more self-destructive paths?

I know I was not allowed to be angry growing up.  “Just deal with it” was the lesson I learned–except no one taught me how to deal with it.  I began cutting when I was twelve, “successfully” keeping it a secret until I went to college, when it exploded beyond my control and there was no way of keeping it a secret anymore.  And by that time, I was hospitalized a few times and eventually sent to a treatment program for self-harm.  Of course, no one had yet to teach me how to really deal with anger and the eating disorder was under full swing.  (Like most people with eating disorders, however, there were multiple causes, so the anger was just one of many.)

I still have problems with anger.  It’s “unladylike” or “inappropriate” or “better left ignored.”  There’s a problem with stuffing it, however.  Eventually it builds up, this gradual crescendo until it can’t stay stuffed anymore and something has to be done to release it or else I get tempted to self-harm or engage in eating disorder behaviors.

So here are some of the ways I have found helpful in managing my anger:

  • Journal.  I journal every day.  But I have found that writing down my anger helps diminish it.  I can be as blunt and tactless as I want because no one will ever read it.  I can exaggerate.  I can blame.  I can name names.  I can go into as much detail as I want.  It’s my journal.  My story.  It’s how I feel and I don’t have to worry if I’m representing the other person or the situation accurately.  I get down my feelings.
  • Artwork.  Different from my normal artwork where I try to actually make a beautiful picture or a meaningful image using skills I learned in art classes.  Nope.  This is when I get out my oil pastels or my crayons and a blank sheet of paper and basically scribble.  I make angry marks on the paper with furious motions and end up with spirals and black circles and thick, dark lines.  It’s a release of physical energy that I can see.
  • Going for a walk.  I have to be careful here.  I used to go for runs when I was angry, and that helped tremendously.  But I can’t do that because of my heart condition anymore.  I can’t even walk fast.  But I’ve found that getting outside and taking a walk through the nearby flower and sculpture garden really does help.  Maybe it’s just time working its wonders, I don’t really know.  But I’ll take it.
  • Cry.  Yes.  I’ve learned to cry now.  I used to not cry at all when I was thick in the eating disorder.  But a good cry in an appropriate place and time can be one hell of a release.
  • Stick my hand in ice water.  This one I learned from my therapist as a way to distract myself if I want to cut.  I found it works for anger as well.  Fill a bowl with cold water and three or four trays of ice cubes.  Then stick your hand in it.  Excuse my language here: It’s fucking intense.  I can’t keep my hand in there very long; I don’t think anyone could.  But try to.  And see if the intensity helps lower the intensity of the anger.  Or releases it altogether.
  • Knitting. Knitting allows me to focus my energy on one thing and one thing only.  And I’ve found that when I don’t have the physical energy for some of the above things, this works rather well.
  • Collage.  I have a crapload of stuff to make collages out of.  And when I’m making one for me and not as a card or letter for someone else, I can make that picture as full of anger as I want.  I can make it ugly.  I can put words in it that I wouldn’t speak out loud.  And then–and perhaps this is what makes it effective–I can tear it to shreds.  Just the act of ripping it apart is a release of energy that I thrive on when I’m angry.  So let’s add that:
  • Ripping something apart.  Find something you don’t need.  A piece of paper.  An old letter.  An old (paid) bill/statement.  Rip it into as many pieces as you possible can.  Let all that energy behind the anger fuel the ripping process.

These are just the ways that I have learned to deal with anger.  I would absolutely love to hear your   healthy ways of dealing with anger.  Let’s help each other by making as long of a list as we possibly can.

Let the comments commence:

April 22, 2011 Posted by | coping, Eating Disorders, feelings, self harm | , , , , , , , , , , , , , , , , , | 4 Comments

chronic illness

a heart necklace in place of my literal heart.

I have a lot of coming to terms to do, as far as this chronic illness is concerned.  Yes, I’ve finally started using that phrase with consistency: chronic illness.  There is no denying it.  Today I was exhausted, and I spiked a fever over 100 degrees Fahrenheit. And at first I was confused.  I mean, a runny nose won’t make my fever spike that high.  Then I remembered my cardiologist telling me not to be overly concerned about sudden fevers–they are a sign my body is beyond tired.  (As long as all the flu symptoms and other illness symptoms aren’t present, of course.)

I was reading from this book: Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness. (And yup, it’s available on Kindle, too)  And this one quote came up that explained today perfectly:

“The life threatening times come, and then they go away, and then you must brace yourself.  You do not brace yourself for the next horrific death-defying moment.  Instead, what you much brace yourself for is the day-in-day-out wear and tear of it. What really hallmarks a life successfully lived with chronic disease is your ability to keep soldiering through.  The bitter pill is that it is always just a little there, or a great deal there, but the unpleasant taste remains, in your mouth, in your routines, in your soul, and that is the fight we are engaged in for the long haul.  We must not become overwhelmed by the exhaustion of it and the fear of the possible next grave crisis.” ~Alida Brill, patient

This does not contradict my earlier post.  She does not say she has to keep soldiering on by herself.  She has surrounded herself with friends and professionals to help her at any moment, any day.

What resonates for me a lot is the day-in-day-out nature of chronic illness, more than the grave crises.  But at no point does she say that the chronic illness dictates how you life your life.

My life is still just that: MY life.

 

April 9, 2011 Posted by | coping, health, heart, recovery | , , , , , , , , , , , , , , , , , | 2 Comments

the problem with being strong

Lately I’ve discovered there’s a problem with “staying strong” all the time: it’s impossible. And the message to “just stay strong”?: great at invoking guilt and shame in the recipient.

I’ve discovered both of these facts quite recently, thanks to my heart.  As I’m dealing with the uncertainty of everything tied up with my heart, combined with Bipolar Disorder Depression flare up, I’ve had a lot of well-meaning friends tell me that I “just” need to stay strong.  The problem being that right now, I feel anything but strong.  Most of the time, if not all the time, when someone tells me to my face to “just be strong,” I smile and nod.  Anything else would be rather inappropriate.  Here’s the problem: very few of my friends know what it is like to have a chronic illness and only one of my friends, who lives 1,000 miles away, knows what it’s like to live with a chronic, degenerative heart disease for which there is no cure or treatment.

Here’s what I learned, literally, yesterday: it’s okay not to be strong.  Yes, when you are fighting any illness, there is a degree of strength involved.  But there are moments when being strong is just not feasible.  These are the times when it’s okay to admit, “I’m having a shitty time and could really use some help.”  “I’m not sure I can keep fighting all the damn time and could use a rest.”  “I could really use a listening ear right now and I don’t expect you to solve anything or fix anything, just listen.”  It’s okay to have days when the social world seems to much to bear because it means faking happy and you just don’t have the energy.

What did I do yesterday?  I vacuumed and dusted my living room, took a nap with my cats, knit, wrote, and read.  I did a couple of errands so I’d have something to eat and drink and gas in my car, but none of those required heavy social interaction.  I took a break from the world.

Today, I plan on interacting with that very world I isolated myself from yesterday.  I know enough about managing depression that complete isolation rarely, if ever, helps the situation.  Nor does it help me deal with my heart condition.  I may have ARVD, an untreatable, progressive, and degenerative heart condition, but that does not preclude me from having a life.  It may be a different life than I had planned, but it’s still a life.  A life which I get to define.

For those of you struggling with any form of chronic illness: it is okay to not be strong 100% of the time.  It is okay to ask for help, to admit that you’re not feeling all that strong at the moment.  We do not do this on our own.  No one can bear my heart condition for me, but other people can help me bear it.

It took me a long time to ask for help for the eating disorder, to admit that I even needed help.  But letting go of that control and facade that gave everyone the idea that I was in control and “fine just fine” was the first step to my recovery.  Letting people in allowed me to heal.  I am not sure why I didn’t make that connection with my heart condition.

So go ahead, let go of the control and let someone in, as scary as that may sound.  None of us have to do this alone.

April 9, 2011 Posted by | bipolar disorder, coping, depression, Eating Disorders, health, recovery | , , , , , , , , , , , , , , , , , , | 4 Comments