Managing The Basics

My parents gave us a cash gift as an anniversary present. It will cover my treatment for this year until my health insurance benefits kickin to cover my pre-existing conditions. Were it not for this gift, I would have spent the next twelve months without therapy, without medications, and without nutritional counseling.

I am proud to be an American. I would not choose to live in any other country in the world. I stand for the National Anthem and the Pledge of Allegiance. That said, I am ashamedthat in the United States the quality of health care one receives is determined by one’s income.

Were it not for my parents’ assistance, I would be going without care. My need for care is not income-dependent. I did not somehow become more worthy for care because of this influx of money.

I began this blog as a personal outlet and didn’t really expect anyone to read it. But, for whatever reason, people are reading it. And if you are reading this now, and you have health insurance and the financial resources so that you don’t even think about whether or not you’d have access to health care should the need arise, please realize that not everyone is so blessed. You have a responsibility to be outraged at this disparity.

Turn that outrage into action. Demand equal access to health care for all Americans, regardless of their socioeconomic status.

Unlike at other times over the course of my eating disorder, I am currently not under any exercise prohibition clause. As someone guilty of excessive exercise as part of my disease process, you might think that I would be taking this opportunity and abusing it as a way to purge calories. You would be wrong.

I’ve gone so long not being allowed to exercise that I’m embarrassed by the shape (or lack there of) that I’m in. I used to get up at 4:30 each and every morning and run for miles. At least 10km every day. Now I’m lucky if I can run one mile without being winded. Running now reminds me too much of how much I am NOT like I used to be.

In non-eating disordered talk, the above translates into, “I no longer weight 100 pounds and abuse my body by over exerting myself every day. I am following my treatment plan and am working on getting healthy.” But my eating disorder ears, I hear, “I weigh so much more now. My meal plan, and my binging/puring behaviors have made me fat and ugly. I am such a failure that I can’t even run anymore.”

I’m living out a cognitive distortion: either I can run forever or I can’t run at all. Part of my brain knows that doesn’t make sense, but it doesn’t motivate me enough to re-frame the thought to something like, “I should get back to running by jogging a few miles a couple times a week.”

What is so incredibly frustrating is that I have the skills to know what is going on: I have recognized the pattern, I can identify it as “all or nothing/black or white thinking,” and I can re-frame the thought in a positive light. I have the CBT thing down pat. What I can’t do is to use that information to make a change in my life.

I’m stuck where I’m at exercise-wise, and I’m slipping backward in other areas. I’ve been isolating for this past week: only hanging out with Gabe, not going to class, not calling my friends, not going to visit B after work. I get overwhelmed just thinking about talking and interacting with people. I’m afraid of what they’ll think of me, that I’ll say or do the “wrong” thing, or that they will judge me in some way.

Ultimately, what I’m really scared of is that the people I depend on, and call my friends, may only be staying in my life because they feel sorry for me, “the depressed, eating-disordered girl.” That if I was healthy they wouldn’t “pretend” to be my friends anymore and that the only reason they stick around is because they pity me. So then I don’t call them because I feel like I’m being a bother or a burden and that they would rather not hear from me.

I also try really hard NOT to talk about my issues with my friends, because I want them to think of me as more than the “sick one.” I don’t want to be defined by my disease. I treat my illness with therapy and writing (including this blog), I don’t want to talk about it with friends because I’m afraid it will become how they define me, if they haven’t already done so. And I know I should give them more credit than that because they are amazing wonderful loving people, but I hate myself so much that I can’t help but think that they think the worst of me.

I can only see myself through my eyes and my eyes don’t like what they see.  

I forgot how unpleasent Ensure really is.

I had planned not to eat today, and I left the house this morning without eating breakfast.

Then I got to work and knew that I had to email E and T and tell them about my binging and purging last night. I was so disappointed in myself when I put it in writing for my treatment team to see that I decided to temper the bad news with good news.

I went into the kitchen at work and found a can of Ensure, poured it into a coffe mug, added all the ice cubes I could fit in the mug, took it back to my desk and drank it. Unfortunatly, one of the “benefits” of working at a clinic is that we have Ensure in our kitchen Lucky me.

So when I emailed E and T I was able to tell them that yes, I binged and purged, but that yes I drank my breakfast.

One healthy choice at a time. One healthy choice at a time. Baby steps.

I went nine days without binging and purging. And then tonight, when G was at J’s getting his wedding ring (apparently one cannot turkey hunt with a platinum wedding band because it is so shiny it scares the birds. So the obvious solution is to remove said band and leave it J’s house where the hunting party had gathered… and then forget it.) I binged. And then I purged.

I was read the riot act today by someone who I’m SURE had my best interests at heart. I do not question her motives. Unfortunatly her words were hurtful, not helpful, and she accused me of not working as hard as I could be to get well. While I’m sure my recent caloric restriction didn’t help any, it was that encounter that really sent me over the edge. So I did what I do to cope: binge and purge.

Honestly, she is right. I’m NOT doing EVERYTHING I could to get better. I’m not in Chicago at Alexian locked on 2E. I’m not seeing an internationally respected eating disorder therapist two or three times a week. I’m not meeting with my dietitian every day.

So what am I doing? I’m working 40 hours a week so that I can have health insurance benefits that will cover my eating disorder costs in one year (pre-existing condition clause). I’m seeing the best therapist that I can currently afford as often as I can afford to see her. I’m driving to Harrisonburg once a week to see my dietitian, which is as often as I can afford to see her. I’m begging for sample medications from the various health care providers that I know because I cannot afford $700 a month in out of pocket payments for my meds.

So ultimately, given my circumstances I AM actually do all that I can. In a perfect world would I be working 40 hours a week? No – it really is too much for me. Would I be in-patient at Alexian right now? Probably — this is as ill as I’ve ever been without being in the hospital. Would I be driving to Charlottesville three times a week to see Dr. S for aggressive medication management and expert psychotherapy? Absolutely. Would I see E every day to review how I did food-wise yesterday and what my meal plan is for today? You bet.

But none of those things are possible. I am doing the best I can with what I have. It would be SO INCREDIBLY easy for me to say, “No. I’m not doing it anymore. I’m not going to go to therapy and hash out my emotions. I’m not going to take five different prescriptions that make me foggy-headed and tired. I’m not going to drive to Harrisonburg every week so that E can hold me accountable for following my meal plan.”

It would be so much easier to give up than to keep doing what I am doing. And days like today, when people who claim to love me accuse me of not doing enough in the name of “tough love,” I really am tempted to do just that — give up. I mean, what the hell is the point? People apparently think I’m not trying anyway. May as well prove them right.

So I binged and purged. And now, as always after a binge/purge session, I feel gross. My head hurts, my throat hurts, my stomach hurts, and I feel woozy from the crazy highs and lows of my blood sugar level.

If I could “just stop” I would. But I can’t “just stop.” Unfortunately, I think this is something that only people with eating disorders, or mental health professions, or a few very enlightened lay people really understand.

I wouldn’t wish this disease on anyone. It robs me of my life. So don’t tell me to “just stop.” Instead, tell me to “keep fighting.” After all, nine days without binging and purging is the longest I’ve gone in months. It may not be a big accomplishment, but I am claim the right to be proud of it anyway.

Grow up. Try harder. Just stop. I understand what you’re going through.

These words are about as helpful to a person with an eating disorder as a bicycle is to a fish (with apologies to G. Steinem), and I heard all of them today.

Here’s a hint: the best way to help someone with an eating disorder is to hug her, tell her you love her, and that you are proud of her for doing her best and working so hard to recover.

Call her when she doesn’t call you. Email her when she doesn’t email you. Visit her when she doesn’t visit you.  Understand that she is so ashamed she just wants to hide from the world and physically and emotionally isn’t able to reach out to you. Reach out to her.

But please, don’t judge her. You have no idea how hard she is fighting just to keep breathing.

E has been after me since the beginning of this journey to keep a “grateful list.” L had us make “grateful lists” during Spirituality at Alexian. A sent me a template of a “grateful list” in the last care package she sent me.

Ok. Enough already. I get the point. Taking the time to list the things I’m grateful for is meant to help me recognize the good things in my life, rather than focusing exclusively on the difficult aspects of life (I know that is a type of cognitive distortion, I just can’t think of the proper term for it).

And I’ve made my grateful lists. Half-heartedly, but I’ve made them nonetheless.

I was laying in bed this evening talking to G and I was overwhelmed by a feeling of… something. I don’t know. (I guess I’d fail a “feelings check,” right, Remuda girls?!). It was a feeling of love, and awe, and appreciation, and amazement — amazement that such a wonderful man would chose me to be his wife, and then would chose to stick by me through this battle.

G did not sign on for this. Neither did I, but, as much as I wish I did, I do not have the option of leaving myself. Wherever I go there I am. But G has made a conscious choice to love me everyday since even before I was officially diagnosed. And I’m using “love” as a verb. He shows me he loves me by his devotion and faithfulness. He loves me even as I hate myself. I can’t imagine that it is an easy task to love someone who hates herself, but he does. Every day.

And I am so secure in his love that I know he will continue to love me through this. Marrying this man was the best decision I have ever made. I couldn’t ask for a better husband and I am so proud to be his wife. If his love could cure me, I would never be sick a day in my life.

So now, each morning when I’m doing my daily worksheets and I get to my “grateful list,” I think I will take more time and send up a prayer of thanksgiving that God brought the two of us together. For that I cannot be grateful enough.

Mondays are my day “off” so they have become my treatment days by default. I saw my RD first and was completely honest with her about my restricting calories. We had a long talk, and it basically boiled down to me saying, “I don’t know if I want recovery; I’m ambivalent about that right now,” and then E countering with, “you are cognitively incapable of making the decision to pursue recovery or not until your meds are better managed. T is not the person who is capable of managing your medications — go back to Dr. S immediatelybefore you decompensate any further.”

I went directly from E to my appointment with T. T has compared my current and past EKGs and is concerned that there is damage to my heart. She consulted with Dr. B, her supervising physician, to see what this meant in terms of psycopharmacology, and Dr. B said, “T, now that there is possible cardiac involvement and Anna’s depression isn’t responding to treatment, you can no longer write her prescriptions. Tell her to go back to Dr. S.”

Dr. S is an expert on the treatment of eating disorders. He is on the faculty at UVA and maintains a private practise in Charlottesville. In addition to doing medication management, he is one of the few psychiatrists that also provides psychotherapy. He is great at what he does, and is respected as a leading expert on eating disorders.

All of this is wonderful except for the fact that I can’t afford to see him.

My health insurance will not cover pre-existing conditions for one year. T won’t write my scripts anymore, and won’t give me any more samples, and I can’t afford to see Dr. S for a year. What the hell am I supposed to do? Just declare temporary defeat and pray that I am still alive in a year so that then I can use my health insurance benefits?

On top of all of this is that fact that my EKG is abnormal. As in, there is something wrong with my heart. T is scheduling me for an echo-cardiogram ASAP (which is another thing I don’t know how we’ll pay for). In addition to worrying about my medication situation, I have this black cloud of potential cardiac compromise hanging over my head.

Part of me must want recovery. If I didn’t want to get better I wouldn’t have spent all day running around to appointments with my treatment team and I wouldn’t be so upset about the fact that I may have to stop taking my medications. There are just so many obstacles in my path that it is becoming increasingly tempting to give up and say “to hell with it all.”

 I’m fighting myself so hard to get better, I shouldn’t have to fight the system, too.

I have gone a whole week without binging and purging. I’ve gone a whole week not drinking myself into oblivion. Weekends are hard for me — the lack of structure, the late nights, the “social drinking” scene. All of those things are triggers, and using my *pattern recognition skills* (G would be so proud, wouldn’t she my ABBHH friends?!) I know that I’m most likely to binge/purge on the weekends.

So I should have a party, right? And when I see all members of my treatment team tomorrow (I hate that, by the way; I think I would do better if my appointments were spread throughout the week, but my new work schedule just doesn’t permit it) I should excitedly tell them that I am making “progress toward recovery.” After all, I haven’t gone a week without engaging since I’ve been home.

Unfortunately there will be no party for me

In our society it is significantly more socially acceptable to refrain from eating than to binge and then purge. And right now, because I am at an appropriate weight for my height (according to the all-knowing treatment team) the fact that I have been restricting in place of binging and purging is not self evident.

What is really crazy is that I know restricting just doesn’t work in the long run: it will either lead to a massive binge/purge session(s) or it will eventually become obvious as my weight decreases at my weekly weigh-ins with my RD. I’m going to get caught. Cognitively it makes no sense, either: I’m refraining from binging and purging because I claim to want “recovery” but I am able to somehow convince myself that recovery and restriction are not mutually-exclusive (note to the non-ED patients: they are).

I want recovery. I just want to weight 90 lbs, too. Ultimately that is the same as saying I want to be healthy and ill at the same time. It just doesn’t work. According to G, what does work is “following your meal plan and stopping the wacky behaviors.” I KNOW this. I just cannot put it into practise right now.

I feel like there are two halves of me battling for control of my life. I am fully aware that I cannot continue to do what I am doing and hope to somehow magically wake up one day and be recovered. I wish people understood that I know what I’m doing is unhealthy, that I just CANNOT stop it. No one tells an alcoholic to just “stop drinking” or a heroin addict to just “stop using.” But for some reason people think it is acceptable to tell me to just “eat” or just “not purge.” Well no shit! If it was that easy to just not do it, we wouldn’t have spent $250,000 on treatment over the last two years.

Eating disorders, and the all too often comorbid disease of self-injury, are addictions. Symptom substitution, like I’m engaging in now, is not a sign of progress. Rather it is a sign that I still don’t know how to cope with that which I don’t know what I need to cope about.

I wish the eating disorder and its symptoms were the problem themselves. Then it would just be a matter of “following my meal plan and stopping the wacky behaviors.” But, for me at least, the problem, or my “core issue” in psyc-talk, is something else all together. And I don’t know what it is, which is the most painful and scary thing about my disease.

I may spend the rest of my life fighting an enemy I cannot identify.

I have problems with anxiety starting in the early evening and continuing until late at night. T suggested I try a small dose of Seroquel in the morning to tide me over until I take my large dose at night, before I go to bed. The rationale was that by taking the whole dose at night, by the next afternoon most of it had warn off. Taking a small dose in the morning was supposed to remedy that situation and help relieve my anxiety, which is a big trigger for me in terms of binging and purging.

I tried the Seroquel in the morning on Saturday. A few hours later, on my way to the Moose Camporey in Covington, I feel asleep while driving. I was on 220, headed south, between Franklin and Monterey. I ran off the road and into the ditch. I’m fine, and miraculously my car is fine, but obviously I cannot take Seroquel in the morning if it is going to render me unable to function for the better part of the day.

I’m frustrated with my meds. As they are, they are not giving me relief from my depression. Yes they keep me sane enough to not want to commit suicide, but I’m still a basket case emotionally. I’m anxious (which is a relativly new phenomena; I think it is because I’m making such an effort NOT to binge and purge that my emotions have to come out somehow), I’m tearful, I feel hopeless — like things will never get better — and I hate myself. I feel like I am such a failure and that all I am is a burden to my husband.

It doesn’t help that so many people still think mental illness is a “choice” or a moral failing, or that you can just “pray your way out of it.” While in my brain I KNOW that depression and eating disorders are organic diseases, just like cancer or type 1 diabetes, in my darkest moments I can’t help but feel like I’ve done something to deserve this.

Unfortunatly, unlike cancer or diabetes, there really are not quantifiable bench marks for treatment. With cancer, you can have blood tests or biopsys to quantify if the cancer is shrinking or has been elimated by radiation and chemotherapy. With diabetes you can do a finger prick to make sure your glucose level is controlled. There is no way to quantifiably measure whether a particular medication is helping lift a depressive episode. It is all “guess and check” — take this medication for awhile and see how you do. Often times it takes up to eight weeks to even know if the patient is going to respond, and eight weeks is a long time to suffer suicidal ideation and intrusive thoughts.

Building a life is a scary prospect, mainly because I have no idea what I like to do, or even what I’m good at. The last part isn’t exactly true, I know that I am excellent university student and an even better anoretic/bulimic. However, none of those activities are sanctioned by “The Treatment Team,” to the contrary they are actually all forbidden. Even as a little kid I always wanted to do exactly what it was I wasn’t allowed to do. Something never change.

But other things do change. Perhaps, if I make changes in my life seemingly non-related to my myriad of mental health issues, it will be easier to change my self destructive behaviors. Either I won’t find myself “needing” them anymore or I’ll just have healthier ways to express myself. Anyhow, the point of this meandering paragraph is to explain how I got wrangled into chaperoning a boy/girl camping trip this weekend.

Not isolating means being an active participant in my life, the lives of my friends, and my community. So when I was asked to be a leader of the local chapter of Venture Scouts, I agreed. (I would like to take credit for this and say I was being proactive in my recovery, but in reality I just wasn’t assertive enough to say no.) So off to the woods I go with a group of hormonally charged teenagers for a night of camping. I actually really love camping. I do not, however, love the prospect of keeping the boys out of the girls’ tent and the girls out of the boys’ tent and preventing midnight make-out sessions in the woods.

But doing things I don’t love is part of having a life, too. At least having a responsible, adult life. I feel like I’m masquerading as an adult and have no buisness chaperoning this trip; that I am incapable of making mature, healthy decisions, and that I cannot speak for myself. I’m sure this midset comes from these past years where I really haven’t been an adult. I’ve been taken care of by my treatment team and was completly reliant on others simply to stay alive. I did not chose to fight this disease because I think I’m worth it. I fight my disease because other people ask and beg me to.

So in addition to pursing things I think I’ll like (drawing mandalas, writing, being back on the ambulance, horseback riding, actually hanging out with my friends), building a life means tackeling the things I know I don’t like, the things I have been hiding from and avoiding so long. Being sick is a great avoidence tactic. How can anyone expect anything of you when you’re barely alive? But being sick is also no way to live. I actually don’t think it is living, I’d describe it more of being in a state of suspended animation, of watching what is going on around you and to you but not being a part of it (ok, that was my dissasociation talking!).

I didn’t mean to write about all of this, my original plan was to explain that this weekend would be different than all my other weekends: I’d be camping with kids and would be expected to set a good example, so no drinking, no binging, no purging, and no not-eating. I ended up talking about how this weekend will be different, but in another way: this weekend I will be capable, I will be responsible for myself (and others). I will do things I don’t want to do, simply because doing so is part of living life. And as much, and in as many ways and I may try to kill myself, some part of me must want to live. Otherwise I would have given up long ago.