mad packing

Brookhaven/Rader Program, Tulsa, OK

Doesn’t it look so pretty?  They always make the pictures in the promotional material look like you’ll be attending some resort rather than a treatment facility where you’re not allowed to have sneakers because the shoestrings are dangerous.

Brookhaven Hospital

201 South Garnett

Tulsa, OK 74128

c/0 Alexis Katchuk

Do not send me weapons of any sort, food items, anything sharp, pills, or hand grenades.  Use common sense.  We can’t have psych patients running around with a bunch of exacto knives.  And although Valentine’s Day is coming up, the SweetHearts will have to wait until after the 14th.

Seriously, I’m nervous, ready, impatient, scared, relieved, and I doubt I will sleep very well tonight.  Deciding what books to take is always a bitch.  I went to buy a new journal since my current one is almost done.  I write in a very specific journal and they were out.  I had to settle for the soft cover version.

I leave tomorrow morning at 6 for the Rader Program in Tulsa, Oklahoma. I have my ipod charged and ready to go, although I won’t be able to have it on the unit  No electronics of any sort.  I am trying to tell myself this is a way to get in touch with my inner self.  I’d say it would be a way to get back in touch with nature but it’s still a bit cold outside and I don’t think they’ll let me just wander outside whenever I want.

This entry is rather lighthearted in nature.  It’s my way of dealing right now.  I will pack.  I will choose my books.  I will tuck in my watercolors and colored pencils.  I will make sure I have enough of my black felt tip markers by Bic, the only pens I journal with, to get me through the next millennium.

Recovery Books

"inchies

So I”m going to make a recovery book, inspired in part by the Recovery Book group on facebook and my friend Katie’s “inchies.”  My book will be a folding book the size of inchies with my own artwork in the form of colored pencils and watercolors and whatnot with some inspirational quotes.

So, my quest for you all is to shoot me some inspirational quotes, keeping in mind that I will not have a great deal of space to write them on.

I promise to show the finished result.

guilty update number two

Here's another one for you, David

So another update.  I’ve been avoiding this one.  I struggle with the feelings of guilt and shame and feel like I’m letting my readers down.  I also am in the process of second-guessing myself, which is always such a fun process.

Things have not gotten better.  In fact, things have gotten worse.  Without going into a list of symptoms, which I always feel just initiates a “yeah, well I’m doing this” mentality in some people, I’ll just say that things are really not good.

So tomorrow I am calling two treatment facilities.  I’m not at a low weight like I was every other time I went inpatient.  And the symptoms haven’t been hanging around as long.  But they did come on full-strength right away this time.  And I don’t know how much resilience my body has anymore.  I know it can’t handle a relapse like my previous two.  And the last thing I want to feel is the sensation of being kicked in the chest as my defibrillator goes off because I went into VTach because my electrolytes are out of whack.  I’m scared of the speed of progression this time, and I’m scared that I can’t stop it on my own.  And I’m hoping that if I go in sooner rather than later, things will be “easier.”  Not that it’s ever easy.   But shorter.  Shorter would be nice.

And yes, I am second guessing myself.  Maybe I can do this on my own, outpatient.  Maybe I should just pull myself out of it and not rely on inpatient treatment.  Maybe I need to just grow up and stop this shit.  (None of these thoughts make any logical sense, I fully realize that.)

I do know I can’t continue what I’m doing.  And deep down I know the futility of doing this on my own.  I love my therapist, but he can’t sit with me three times a day, seven days a week, and stay with me for an hour after each meal.

So I make the phone calls tomorrow.  I start this process all over again.  I wish someone else could make these calls for me, because I’m just plain tired.  But I’ll be an adult.  I will make the calls.  I will put my name on the waiting list.  And I will go.

Confessions

really have no idea why i chose this picture, but i like it. and yes, it is me.

I’ve been rather silent here lately.  Guilt is a prime motivator in my life.

I have not been doing all that well.  Three weeks ago I saw my favorite PCP for the last time, or at least until I’m a student again.  I weighed in at my highest weight.  Ever.  And not just by one or two pounds.  The number shouldn’t have been that much of a shock since I’ve had to weed out my closet and put clothes that no longer fit in storage.  I’m not talking about being on the high end of normal.  And while I know the BMI scale has its limitations, I’m not even on the high end of normal.  I’m well into the “overweight” category.  This is not good for me mentally or for my heart.

It took me two years of maintaining my ideal weight to finally be okay with it.  There are possible explanations: hypothyroidism, depoprovera.  I’m now on synthroid, which has not helped.  And we stopped the depo shots.

I saw my new PCP on Monday, who supposedly specializes in adults with eating disorders.  I hope she doesn’t talk to all of them as she talked to me.  Her advice, without asking what I was already doing to help the situation was “exercise more vigorously and eat less.”  When I told her I can’t get my heartrate above a certain, rather low, level, she said, “That just doesn’t make sense to me.”  When I tried explaining the ARVD, she just shook her head in disbelief.

I haven’t reacted well.  I will admit that.  I haven’t eaten that well lately.  The only advice I can get from my treatment team is “be patient,” which I’ve been hearing since June, only to see my weight continue to leap upwards on each visit.  I can’t afford to see a nutritionist; paying my electricity and gas and phone bills is gonna be tough enough.

I have been 100% honest with my therapist and psychiatrist.  I’ll give myself credit for that one.  But I will admit to feeling rather hypocritical given the nature of this blog, which has resulted in my silence.  But I decided to just lay it out there and be honest here, too.  I have not relapsed, but I am struggling a bit.  I’m talking to my team, the two members who will listen, and I’m taking small steps to rectify the situation.

“exercise more vigorously and eat less.”  This one’s going down in the record books.

Take your voice back and use it

Lonely

Someone’s status update on facebook got me thinking today, and it got me thinking only because I’ve seen a lot of similar updates.  They go something along the line of “My treatment team just isn’t seeing that I’m not doing well right now.”  Insert “slipping” or sometimes “sucking ass” or “failing miserably” for “not doing well” and you’ve got a significant number of status updates on the eating disordered Facebook community.

I can’t say I’ve never felt the same way.  And even right now, I feel like my treatment team isn’t “getting it”–but not “getting it” as in “I’m falling apart in front of their eyes and they don’t see a thing” but not “getting it” as in “I am trying my damndest to explain to them what is going on and my words are coming up against a brick wall.”

Do you see the difference?  In the first example, I’d be expecting my treatment team to read my mind and see what is going on in the hours and days that they don’t see me each week.  I’m not telling them anything.  Perhaps I may say, “Oh, things suck” but as if that’s not an overused phrase that doesn’t need further explication.

In the second example, I am telling them how I’m feeling and what is going on on a daily basis.  I’m letting them in on my week.  They don’t have to guess.  They don’t have to make conjectures.  They don’t have to be mindreaders.

I understand that it’s difficult to speak up, that it sometimes feels easier to use actions instead of words.  But if you choose to do that, you cannot blame your treatment team for not getting the whole picture.  Doctors and therapists, even though they are trained in the ways of the mind, are not mindreaders.

At some point, if you want to get better, you are going to have to take recovery into your own hands and talk to your treatment team and be honest with them.  They cannot help you if they don’t know what’s going on.  All they can do is guess, which usually leads to frustration on everyone’s part.

If you haven’t been honest and forthright, don’t blame the treatment center for failing you.  Don’t blame your doctor or your therapist.  Don’t blame the meal plan or the nutritionist or the unfairness of the situation.

The eating disorder took your voice away.  Take it back and use it.  It’s the only way you can expect them to help you.

dare yourself

Here are some of my dance shoes: a couple of pair of pointe shoes (one pair was worn a grand total of one time before I knew they were totally wrong for my feet), some leather soft shoes and a lone pair of black canvas soft shoes.  And some extra ribbon.  My cardiologist has given me permission to take a barre class if I can find one that I like.  Perhaps in time I can build up to some center work as well.  So that’s one of my goals for the new year: find an appropriate ballet class.

I’ve noticed on Facebook the New Year’s groups starting to spring up.  Things along the line of “Kick Ed’s Ass in 2010.”  I like the intention of groups like this one, but I wonder if the focus is in the right place.  Fighting the eating disorder is certainly important, please don’t think I’m saying otherwise.  But for New Year’s Resolution groups, I feel like the focus should be on adding something to your life.  Because taking away the eating disorder is wonderful and necessary, but if you don’t have something to replace it, you will be left with a giant hole that aches something fierce.

I want people to start the New Year off looking for something to fill that hole. Even if you haven’t given up all of the eating disorder yet, start filling the hole.  You may have to draw on hobbies you enjoyed before you were sick, or you may have to pick up something new.  But there will have to be something.  Something you love to do, something that thrills you, something that makes you feel whole, something that maybe no one else enjoys but you do.

I know when I gave up  my eating disorder, I wanted one thing to replace the one thing I was giving up, but I found that there is nothing in this world that is shaped exactly like the hole the eating disorder left.  This is something that I don’t think is talked about enough, the fact that nothing will fill the eating disorder’s role in your life–and nothing should.  The eating disorder is a destructive force, and yes, it is going to leave one hell of a raggedy shaped hole when you finally let it go.  But that’s the beauty of being a well-rounded person: you can have lots of little things that can sneak into those odd shaped nooks and crannies and before you know it, that space will be filled, and you will have a lot more to fall back on.

I’d love for someone to start a group with the intention of trying something new each week or each month.  We were focused on the eating disorder for so long; now it’s time to open up the windows and doors and step outside of that closed off world.  Step outside, breathe fresh air, let the breeze roll over your skin.  Look around you and dare yourself to do something new.

Finally!

So it’s been awhile since I’ve blogged, not because I stopped wanting to blog but because I had no access to a computer.  Or my cell phone.  Or a regular phone.  Or my own bed . . .

About two-and-a-half weeks ago, the depression got bad again and I spent about five days in bed or on my couch.  The medication change that they did in the hospital in October had to be discontinued because of intolerable side effects.  I saw my psychiatrist and, considering the level of the depression and how quickly it got that bad, we decided that the best course of treatment would be to do ECT (Electroconvulsive Therapy).  And to do that, at least initially, I had to go back in the hospital.

The main concern, again, was safety regarding my heart while doing this treatment, so I had to get cleared by my cardiologist and the cardiology team at the hospital and we had to talk with the makers of my ICD.  I had my first treatment on Wednesday and my second on Friday.  Everything went well and I get to do the rest of the treatments on an outpatient basis.

I had ECT a little over ten years ago, and it did help me get out of the worst of the slump I was in, although the doctor who administered the treatments then did not take me off of certain meds like he was supposed to.  And the way they are administering the treatments (bilobally rather than bitemporally) results in almost no headache or confusion or memory loss.  Both times, I remember everything right up until I fell asleep from the anesthesia and then waking up in the recovery room.  The first time I had a bad headache and jaw ache, but they adjusted my blocking medication for the second treatment and the only hint of a headache showed up around 7 pm that night.

I hesitantly say that it’s helping.  I’m afraid to jinx it by saying so this early, but my doctor said that some people feel a slight difference after only one treatment.  I’m afraid that if I say it’s working, it will stop working, however irrational that thought is.  But I do know that the fatigue and memory loss I experienced last time I had ECT is not present at all, and that is a blessing.  I haven’t had any arrhythmias during or after the treatment sessions, which is something they were concerned about.

It’s nice to be home, with peace and quiet and my cats and the freedom to drink coffee whenever I want!  The unit was a relatively loud one this time, with lots of drama, and when I’m not on my mood stabilizer (it’s a anti-seizure medication so they had to take me off of it for the duration of the treatments), my nerves tend to get raw rather quickly.  I spent a lot of time in my room reading, which is good for the book part of me but not the social part of me.

Being Bipolar sucks.  I hate that this is something I don’t have control over.  At least with the eating disorder, once I made the active choice to recover, recovery was in my control.  I chose to follow my meal plan and I chose to keep my weight up.  These were active choices I made multiple times a day until they became habit again.  But with Bipolar Disorder, I don’t choose to wake up happy or depressed.  Yes, I can choose to “act opposite” to a certain degree, but I cannot command my neurotransmitters to fire correctly and produce all the right chemicals at the right time.  A great deal of that is out of my control.  Even though I was taking my  meds as prescribed and going to work and “doing the right things,” the depression came back.  This is part of having a life-long illness.  I can manage the symptoms as best as I can, but there are going to be times in my life when I will have to make medication changes or, perhaps, have more sessions of ECT.  I don’t like this, but I know there’s no cure for this.

In the meantime, I have a great core of friends here who have helped me out and will take me to my outpatient sessions and will see me through this time.  All in all, things are good.  I could have waited until the depression returned to a suicidal level, as I did ten years ago, but I chose to take action now.  And I suppose, in some ways, that means I do have some degree of control over this.  I choose to take my medication and have ECT, which both help manage the symptoms.  So, in that respect, things are within my control, at least to some degree.  Knowing that I am doing all that I can to help myself is a comforting thought because it makes me feel less helpless.

delayed giving of thanks

wordle.net

I have to admit that this whole giving of thanks thing was a bit more difficult this year.  I’m 1,000 miles away from my family because I chose to do the adult thing and have a job.  I will also be away from them on Christmas morning, but at least it won’t be because I’m in the hospital.  So there’s one thing of thanks right there.

On Thanksgiving morning, I drove to my friends’ house to feed their dogs and let them out for a brief run.  On my drive back to my own place, I saw several runners.  This did not help my mood at all.  Ever since I was a runner-around the age of 12–I would go for a run on all holidays.  I can’t really explain it.  New Year’s Day was the most important one–getting the new year off on the right foot.  My dad always runs on holidays, and I learned to run with him, so maybe that’s my explanation.  But over time it just felt right.

So I see these people running and this feeling of bitterness creeps up inside of me.  A bit of anger, too. “If I can’t run, then they shouldn’t be able to, either.”  I know that is highly illogical and unrealistic and I really do support my friends who are runners.  But sometimes it just plain sucks knowing that I will not run again.  It sucks knowing that it wasn’t really my choice.  I mean, I could go for a run.  No one is going to stop me.  But the knowledge of what could happen on that run does stop me.  It’s a part of my life I still miss.

But wallowing in self-pity over something that isn’t going to go away for the rest of your life isn’t always that helpful.  So here are some things I am thankful for:

• I have an amazing group of friends, both here in Missouri and back on the east coast.
• Even though I am taking a year off of school, I am becoming happier with this program.
• I have a part time job I like, with coworkers who have taught me a great deal in two short weeks.
• I love my cats!  (Their page has been updated, by the way)
• I am healing.
• I have Lily (the ICD), and while she may feel like a pain in the ass sometimes, it is a relief knowing she is there.
• I can knit, crochet, and bead with the best of them and am almost finished making my very first pair of socks.
• I can enjoy the holidays and go to parties without worrying about how much to eat and what to eat and who is watching.
• I will always be thankful for life without an eating disorder, regardless of the time of year.

The list is incomplete, but at 8 am with only one cup of coffee in me, it’s a pretty good list!  It is the holiday season, and I’m going to make the best of it.  I have decorations up–the christmas moose are out in plenty and my two Build a Bears have their party get ups on.

status updates

 

 

wordle.net

This post is sponsored by my Questions Page, the question being:

“What do you think of people psting triggering status updates on facebook? I know youve adressed pictures, but when people post status updates, often they claim it is for support and not to trigger others. Where do you think the line should be drawn between looking for supprt and triggering others?  Youve talked about how NOT to use facebook, how do you suggest someone with an ed SHOULD use Facebook for support? What do you suggest people do when their freinds are being triggering on Facebook? After all, its not exactly easy to say, sorry girl, youre my good friend, but we can’t be facebookf friends…”

 

Status updates.  I believe I know the type referred to in this question:

• I’m having such a shitty day with my meal plan but I’m sick of people getting on my case.
• I can’t believe my doctor wants me to eat all this!
• I can’t believe my doctor wants me to go IP.  He’s full of shit.
• Really struggling today and would prefer to be left alone.
• Really worried about my doctor’s appointment today.  He’s not going to be happy.

This last one always makes my day.  I want to ask, “Why the hell are you telling us this?”  Do you want us to say, “Oh, I’m sorry.  Hope it goes well.”  or “I’m sorry, hon, it will all be okay.”  or “I’m really worried about you.”

Every single one of these status updates asks for a response from people, which is typical of any status update, but these are a bit more manipulative in nature.  Posting as your public update that you want to be left alone is contradictory and is only asking for a bunch of “what’s wrong, sweetie?” responses that will feed right into whatever moodstate made you write the status to begin with.

Then there are the more obvious triggering updates:

• The doctors put me on bedrest again.  It’s so annoying.
• My heart’s beating funny.  Maybe I should have had my ensure earlier today.
• I know my doctor will be mad at my weight tomorrow, but I just don’t have it in me to eat today.
• I don’t give a fuck anymore. Fuck everyone.  I’m off to be with PW.

Yes, I’ve seen that last status before.  I’ve seen all of these status updates before.  The last one is particularly upsetting as PW stands for Polly Williams, one of the four main individuals featured in that awful documentary Thin. Polly was also my real life friend long before Thin was even in the making.  And it’s a slap across my face for someone to post this update.  Why not tell people you’re going to swallow five bottles of pills and a bottle of vodka while you’re at it?

Status updates like this put people in a helpless position.  And they trigger those individuals who are still struggling.  ”I’m not sick if I’m not in treatment.”  ”I’m not sick if I’m  not on bed rest.”  (seriously, why post that? Are you proud of it?)

Most of all, how is someone who is trying really hard to recover supposed to feel when reading all these status updates from people who don’t really want help and are broadcasting it to facebook?

My advice, and this is tough to hear, and it was tough to take when I was at that stage: do a facebook cleaning.  Take those friends off your list.  You do not owe them anything.  If they don’t respect other people enough to care about how their words affect you, then unfriend them.  You primary responsibility is to yourself right now.  When you are stronger, healthier, you can go back and maybe help those other individuals.  But right now, focus on YOU and getting YOU better.

I know some people know each other in real time and not just through facebook.  If that’s the case, bring up his or her status updates through a private message and say how it is affecting you and that you need to focus on your recovery right now.  If he or she cannot respect this by changing their status updates, then say, “I’m sorry.  I’m not in a place to read them right now.”  Block them from showing up on your newsfeed and don’t go to their personal pages.  Or unfriend them.

Sounds harsh?  They will say so.  But how are you supposed to recover if you keep yourself planted in the same unhealthy environment?  Plant roots somewhere else.  Find people who will support your efforts toward recovery and who will not trigger you on a consistent basis.  It’s not being selfish.  It’s taking care of yourself and respecting yourself.

You come first in your recovery.  Always remember this.  You come first.

 

 

 

Survey Monkey!!!

I am submitting a proposal for a paper for a conference. (Association of Popular/American Culture)  My topic is about the eating disorder community on Facebook.  There has been research done about media, magazines, advertising, and pro-ana sites.  I think it’s time we look at how healthy Facebook is, whether it encourages recovery or not or whether it encourages an individual to stay stuck in his or her illness.

There are two parts to the survey, only because I only have a basic account and can’t have more than 10 questions on any one survey.  I am asking you to please take a few minutes and answer 20 questions, 19 of which are simple multiple choice questions.

Facebook and Eating Disorders:

Survey One

Survey Two